A New “Ritalin”: Extended-Release Quillivant Liquid & Chew

Quillivant Quillichew

In light of the ongoing problems with Concerta generics, yesterday I updated this 2013 post about a novel methylphenidate (MPH) product: Quillivant XR. Now, given new information, I’m again re-updating today, May 19, 2020.

Before getting into the details about the (apparently) resolved problems with Quillivant XR, let me explain what I mean by novel. I mean novel delivery systems. With Quillivant XR, the delivery system is a liquid. The chewable version, QuilliChew XR, came out in 2015.

You might already know that all MPH-based stimulant products (e.g. Ritalin, Concerta, Daytrana Aptensio XR, Metadate CD, Methylin, Jornay PM, Adhansia XR, and Cotempla) contain the same medication. It’s the delivery system that makes all the difference in how fast the medication enters the bloodstream—and the rate in which it exits.

That’s why, even though these products contain the same medication, they vary in efficacy for individuals.

The Problematic History with Quillivant: Resolved?

I’m constantly aware that more choices mean more people have a better chance of finding a stimulant that works best for their unique neurochemistry and preferences. For example, many people with ADHD have a “gag reflex” that makes swallowing pills difficult. Hence, a liquid or chew might be a useful alternative.

At any rate, initial interest in the Quillivant products subsided amidst product shortages and, later, a recall. When I checked the FDA website recently, I found no more shortages. It seemed time for an update.

Minutes after the updated post went out yesterday, however, a kind reader alerted me to some alarming news about Quillivant’s history. I investigated and raised these concerns with a company representative.

Overall, it seems that much confusion resulted from Pfizer purchasing the product from NextWave/Tris—and then Tris buying it back—all in the space of about 3 years.  (It’s very hard to follow the trail, though, given all the subsidiaries.) At any rate, those problems seem to have been resolved. More details below.

In This Post:

In this post, you’ll find:

  1. A reader’s concerns
  2. A brief explanation of each Quillivant product
  3. Status update from my conversation with a company representative
  4. Consumer tips from the company in making sure your pharmacy follows instructions properly
  5. How food and food products such as citric acid might affect these products’ absorption and efficacy (judging from the traffic to this post, this is a common question:  Can Acidic Foods Affect Stimulant Medications for ADHD? 
  6. The Quilllivant Savings Program

A Reader’s Concerns: Mistrust for Quillivant

I’m grateful to a kind reader named Ed for writing this in a comment:

Regarding Quillivant XR: early in Jan 2018, our son’s Dr called us to an urgent appointment to discuss a change of medication.
Reason being “Quillivant production is halted”. We had to jump to another medication for his next prescription due the next day.

No one knew anything about the why, only a vague rumor about the uneven dissolution in the bottle, leading to uneven mix for every dose taken from each bottle. I found several other parents from other doctors also surprised by last-minute change.

A couple of weeks later I found this recall document. https://s3.amazonaws.com/prod-mdmembers-content/content-files/News/recalls/2017/Quillivant1.pdf

Quillivant XR had been recalled 4+ months before I was told. They clearly communicated to their distribution chain. As for the consumers? Nothing. They put their focus on avoiding commercial liability, and manage product stocks.

Hence, I can’t help but feel a deep mistrust for everything Quillivant XR: did they fix the dissolution problem? how safe is the solution? Will they communicate any better next time?

I first reported on Quillivant XR in January of 2013. That’s when I published an earlier version of this post. Shortly after that, the medication experienced widespread shortages. In 2012, Pfizer had acquired Quillivant from developer NextWave, with manufacture and distribution by co-developer Tris Pharma.

As of December 2019, the FDA Drug Shortages reporting site indicated available supply for Quillivant XR.  In addition, a chewable option, QuilliChewXR, had been introduced in 2015. That was my main impetus in writing this update. Then Ed, a kind ADHD Roller Coaster reader, clued me into the rest.

Quillivant XR: Liquid Extended-Release Form of MPH

Quillivant XR is a liquid, extended-release formulation designed to last 12 hours. (As always, your mileage may vary, given your unique neurochemistry).

Basically, it comes as a powder that your pharmacist will mix for you into a liquid. You will receive:

  • Glass bottle (containing the liquid)
  • Oral dosing dispenser, and
  • Bottle adapter.

You’ll find the question-and-answer page on this product here: Questions/Quillivant XR.

Quillivant XR

 

Easier to Swallow; Enables Precise Dosing

Quillivant XR liquid offers two obvious benefits:

  1. A liquid stimulant might be an extremely useful option for individuals who have a hard time swallowing pills or capsules. Many individuals with ADHD have a “gag” reflex.
  2. A liquid stimulant also enables more precise and individualized dosing – for children, teens, or adults. After all, sometimes a person’s ideal dose lies somewhere between the available dosage strengths of the pills or capsules. (This is not a claim made by the company.)

This isn’t the first liquid-stimulant formulation. It does, however, seem the most sophisticated in its extended-release profile.

Simply put, a profile refers to the pattern the medication follows from the time it’s taken to the time it wears off.  Below is the profile for Quillivant XR, compared to an immediate-release (IR) methylphenidate oral solution.

Quillivant XR profile

Note that  Quillivant XR appears to avoid the “roller coaster” ups and downs that are so common with the IR products.

Also worth noting: Other extended-release methylphenidate options, such as Concerta, also show more sustained and smooth profiles compared to the immediate-release formulations.  So do some amphetamine-class stimulants such as Vyvanse.

A Preferred Profile for Some, Not for Others

At the same time, this profile might not work best for you or your loved one.

Quillivant profile

For example, let’s look again at the profile for the immediate-release (IR) methylphenidate oral solution. See that “spike” between 5 and 10 hours (on average)? That might be exactly what some folks need—an extra boost of the medication at that time. Compared to this, Quillavant starts a steady decline at about 5 hours.

Each person will have a profile preference, either due to cognitive demands during the day or simply the way his or her body metabolizes the medication.

QuilliChew XR: Chewable, Extended-Release Form of MPH

QuilliChew has its own FDA product insert. It’s difficult to compare the two profiles (Quillivant XR liquid and QuilliChew) because they use different labels. Roughly, they seem very similar.

Quillichew profile

QuilliChew XR comes in a blister pack, as a chew. Two doses (20 mg and 30 mg) are scored to allow half doses. That is not the case with the 40 mg dose.

Status Update

Given the problems with the Quillivant XR liquid in the several years following its introduction, I asked a Tris company representative for an update—and some explanations.

Here is a summary:

  • The 2017 recall (linked to above) happened when Pfizer owned the company. Trist since purchased the company, NextWave.
  • The recall concerned two lots of the product that “did not meet the specification for dissolution.”  There was no contamination or other severe problem. But the dosing apparently was affected (which, I know, can present its own kind of problem). There have been no recalls since that one.
  • There is no longer a product shortage.

Quality Depends on Pharmacist And Consumer Following Instructions

According to the Tris representative, there have been reports of pharmacists not properly following instructions with the Quillivant XR liquid product.

The product kit, as depicted above, includes an empty glass bottle. The pharmacist should add the powder to that glass bottle, mix with the indicated amount of water, and shake vigorously.  (Consumers should also shake the bottle vigorously before each use.)

Apparently, some pharmacists have ignored instructions and opted to mix the solution in alternate containers, including plastic and amber-colored.

Why is this a problem? Because, according to the Tris representative, proper emulsification (the water mixing well with the powder) depends on the liquid hitting that type of glass.

Given this information, it behooves consumers to directly question the pharmacist about the procedure before purchasing Quillivant XR liquid.

Now, onto the other issues.

Does Food Interfere With Either Quillivant? Uncertain

Generally, there are two areas to consider when it comes to stimulant medications potentially reacting with food or vitamins:

  1. Citric Acid
  2. Dietary Fat

Citric acid is in orange juice and some multi-vitamins. You’ll also find it as a preservative in many food products (check the label).

To varying degrees, Citric acid can interfere with some stimulant medication’s effectiveness.  (See one of my most popular blog posts: Can Acidic Foods Affect Stimulant Medications for ADHD?)

Some stimulant medications are affected by dietary fat.

Each “Quill” product can be taken with or without food, according to the product inserts.

Let’s examine each Quillivant XR product for these two factors: citric acid and dietary fat.

1. Quillivant XR Liquid: Affected by  Citric Acid or Fat?

I find no evidence on the drug insert for Quillivant XR liquid—that consuming citric acid is a concern. In fact, the inactive ingredients include one type of citric acid (anhydrous citric acid).

What’s anhydrous citric acid? From the definition at Drugs.com:

It is found naturally in citrus fruit such as lemons and limes and is used as a natural preservative.

Anhydrous citric acid has had the water molecules removed and is usually in a dry, powdered formulation.

Meanwhile, consider this item about consuming high-fat meals, also found on the drug insert:

 In a study in adult volunteers to investigate the effects of a high-fat meal on the bioavailability of QUILLIVANT XR at a dose of 60mg, the presence of food reduced the time to peak concentration by approximately 1 hour (fed: 4 hours vs. fasted: 5 hours).

Overall, a high-fat meal increased the average Cmax of QUILLIVANT XR by about 28% and the AUC by about 19%. These changes are not considered clinically significant.

I am not a psychopharmacologist. But I interpret this to mean that fasting prolongs the time it takes to achieve peak concentration by one hour.  Consuming a high-fat meal reduces the time it takes to achieve peak concentration.

You can read more details about Quillivant XR here.

2. QuilliChew XR: Affected by  Citric Acid or Fat?

The product insert indicates no warning about citric acid. In fact, citric acid is an inactive ingredient. I’ll list all the inactive ingredients here. Sometimes there are food/chemical sensitivities. If so, this should be checked before taking any new medication:

Inactive Ingredients: aspartame, cherry flavor, citric acid, crospovidone, D&C red #30 (for 30 mg strength), D&C red #7 (for 40 mg strength), guar gum, magnesium stearate, mannitol, microcrystalline cellulose, polyvinyl acetate, polyvinyl alcohol, povidone, silicon dioxide, sodium polystyrene sulfonate, talc, triacetin, xanthan gum.

Regarding the only potential food effect:

High-fat meal had no effect on the time to peak concentration, and increased Cmax and systemic exposure (AUCinf) of methylphenidate by about 20% and 4%, respectively, after a single dose administration of 40 mg QuilliChew ER.

Quillivant Savings Program

Quillivant Savings Program

In my initial post (2013), I noted various problems with using the Quillivant XR savings card. Perhaps those problems resolved in the interim.

According to the company website, the savings program ended on 3/3/20.  Yet, if you click on “Get Savings Card,” you come to this page. It says the offer expires 3/31/21.

If you have questions about the product or the savings program, call 1-844-865-8684.  The Tris representative I spoke with says you can also text to this number to immediately receive your savings card: 844-970-2343.  (If you have trouble, you can call 888-840-7006, M-F, 9-6 Eastern Time.)

With Either Product: A Caveat About “Fruit Flavored”

I want to emphasize one feature of these medications: flavor. Quillivant XR liquid comes in banana flavor. QuilliChew uses cherry-flavoring.

Of course, stimulant medications in any form flavored to taste like fruit or candy require extra diligence.   It might be wise to explain to a child taking the medication that neither form of Quillivant XR is candy. Of course, as with all medications, also keep it safely out of a child’s reach.

Both Quillivant products are FDA-approved for children, adolescents, and adults.

In the comments, you’ll find plenty of first-hand experiences with this medication, along with some questions. Most of them date to the original post, in 2014. Feel free to join in.

Please note that I accept no support of any type from pharmaceutical companies. My advocacy is entirely self-funded. This ongoing report is a public service.

—Gina Pera

274 thoughts on “A New “Ritalin”: Extended-Release Quillivant Liquid & Chew”

  1. Hi Gina, txs for always keeping everyone updated.

    Regarding Quillivant XR: early in Jan 2018, our son’s Dr called us to an urgent appointment to discuss a change of medication.
    Reason being “Quillivant production is halted”. We had to jump to another medication for his next prescription due next day.

    No one knew anything about the why, only a vague rumor about the uneven dissolution in the bottle, leading to uneven mix for every dose taken from each bottle. I found several other parents from other doctors also surprised by last minute change.

    A couple of weeks later I found this recall document. https://s3.amazonaws.com/prod-mdmembers-content/content-files/News/recalls/2017/Quillivant1.pdf

    Quillivant XR had been recalled 4+ months before I was told. They clearly communicated to their distribution chain. As for the consumers? Nothing. They put their focus on avoiding commercial viability, and manage product stocks.

    Hence, I can’t help but feel a deep mistrust for everything Quillivant XR: did they fix the dissolution problem? how safe is the solution? Will they communicate any better next time?

    1. Yikes, Ed! Thank YOU for bringing this to my attention. I’m horrified that I missed this. And I definitely understand your concern.

      I will update the post right away. So sorry.

      It’s gotten harder and harder to get solid pharma news of any type. Companies no longer routinely issue press releases, and the trade journals seem to cover less. But I should have looked more thoroughly.

      Misdeeds of this magnitude have seemed much less common with Big Pharma than with Big Generic. Tris seems to bring us the worst of both worlds. (It’s NextWave subsidiary apparently manufactures Quillivant.)

      The FDA violations for Tris are listed here:
      https://www.fda.gov/inspections-compliance-enforcement-and-criminal-investigations/warning-letters/tris-pharma-inc-534537-03262018

      Tris was also called out for violating pediatric ibuprofen standards (but that article also says that Tris no longer makes Quillivant, but maybe the reporter didn’t know that NextWave is Tris): https://www.cbsnews.com/news/drugmaker-behind-ibuprofen-recall-has-history-of-fda-violations/

      The FDA chief who scoffed at FDA scientists’ concerns about bioequivalence for novel delivery-system drugs such as Concerta? When he left after his short tenure (appointed by Trump), he went to the Pfizer board. (And the Heritage Foundation, from when he came.)

      Thank you, Ed!!

      g

    2. Hi again, Ed.

      Quillivant’s manufacturer wrote to me, asking for more information.

      I have forwarded their message to the e-mail address you used here.

      g

  2. Thank you I hope other parent let me no what they went through I’ll try it tomorrow with him plus its lower dose they started him on

    1. Anna — Chances are, there will be only positive effects and few side effects.

      Sometimes, the side effects go away after taking the medication daily for several days…it’s an adjustment.

      But the stimulant medications clear the system quickly. It’s unlikely that, even if he were to experience a side effect, it would last very long.

      He might get a little anxious, for example. Maybe as if he’d had a cup of coffee. If so, it goes away.

      Wishing you and your son the best,
      g

  3. Yes doctor told me to.start it on sat Sunday and the week to see how he does and 1 teaspoon of 5ml since he is new to meds I’m just going do what doc say plus they going call me on thur to see how he doing on it but I’m just going eather give it with hes milk are juice and feed him with it I dont want him to get any side effects from it

  4. I wont be telling him its inside juice and doc want me to start it in sat 1 day but after that I will not be doing weekend only on school days since that problem he havning in school thank you for responding and I’m sorry be bother

    1. Hi Anna,

      You’re not a bother. I understand your concerns.

      Have you thought about this? That the doctor might want you to try the first dose on a Saturday so you can be with him and see how he reacts?

      Do you really want to give him the medication and then send him off to school?

      g

  5. My question is has anyone try the ritalin 5mg on there 5 year old child the liquid one its only once a day for school what to np if anyone child had side effects from it

    1. Perhaps other parents will respond.

      As an expert in this topic, I can tell you…..everyone is different. No two brains are alike. Our brain and body chemistries are unique. While we can expect a range of fairly predictable results, when starting at a low dose, we cannot know what type of side effects might follow — or what dose — will be best for that individual.

      I encourage you to write down the date, the medication and the dose, and note his responses.

      This data will come in handy as you continue to look for a good “fit.”

      Perhaps it will be easy, and 5 mg will sufficiently help him. Or, he might need a higher dose.

      g

  6. No he only has ADHD nothing else and learning disability and the Ritalin they gave him is 5mg liquid one its only for school I’m not doing it for my home I would deal with the way he is its Mainly for school classes not focus hes all over the place just wanted to no if this medsion is on for him and I’m going put it inside hes juice in morning I’m starting tomorrow just 1 day that is all

    1. Hi Anna,

      Then it’s well worth trying.

      Keep in mind. There are two classes of stimulants: methylphenidate (ritalin, quillivant, etc.) and amphetamines (vyvanse, adderall, etc.). Some people respond better to one class over another. It boils down to individual genetics and neurochemistry.

      It’s really best to have the medication be effective throughout the day. ADHD medications aren’t for getting good grades. They are for improving brain function in many ways, including socially.

      He might not have “LD” at all — but difficulties with learning, writing, hearing, etc, from ADHD itself. He is only 5, so he has lots of development to go.

      But I’m a firm believer in treating ADHD symptoms early. There are developmental milestones that depend on strong brain functioning in the “circuitry” affected by ADHD.

      Anna, it sounds as if your fears could sabotage his treatment. Try to approach this in a less fearful way, because children tend pick up on parents’ fears.

      The more you learn about how the medication works, the less fearful you will be.

      Maybe the product you have it Methylin? I think that’s the only liquid form of Ritalin (Methylphenidate). That an Quillivant.

      Are you going to tell him that you’re putting the medication in his juice?

      I encourage you to think this through and be thoughtful about it, not fearful. It might take more than one day to judge how helpful the medication can be.

      good luck,
      g

  7. Am 52 and have been medically treated for ADHD for 10 years. My brains favorite drug was Intuniv -however, my blood pressure runs on the low side and the side effect was a bit scary. We tried a couple of stimulants both IR and LR and the crash was no good. Have been on Vyvanse for five years and it just works. Sometimes, when I forget to take it I quickly remember why I take it to begin with due to jitters ,anxiety, and scattered OR hyper focus. Vyvanse calms me. Oddly enough it too lowers my BP but not to double digits of 80/50 like Intuniv. The food interaction is a real thing. What I’ve learned: 1) consume a quality protein shortly after taking it 2) avoid coffee completely BUT if you’re going to anyway-wait a full hour after dosing. 3) avoid vitamin C in am. We need this vitamin obviously but take it with your evening meal when you’re med is wearing off anyway. This includes vitamin c skin serums. Use at night. Most work poorly under makeup anyway. 4) If you’re a female between 35-55 you’re either peri-menopausal or post-menopausal and may be using bio-identical creams or pharmaceutical creams like DHEA , Pregnenolone, Testosterone , E1,E2, (if you’re doctor is prescribing E3-fire them and seek council elsewhere), or Progesterone. These are all well and good if you’re being tested and monitored BUT the first 3 may require a lower dose of your medication. 5) CARBS: oh my -not much talk of them but my experience ( take with grain of salt!) is that simple carbs will make your gut acidic and keep it that way ALL day. If you’re a regular sweet fiend, you may find trouble getting ANY of the ADHD meds to work whether you’re 6 or 60. Plus, after 40, haven’t we noticed how uncomfortable it becomes digesting Thanksgiving dinner? Kids don’t experience the acidity like adults do but let them eat waffles with syrup and their meds won’t work at all or as well. This I know from helping my youngest manage her condition. 6). If you avoid simple carbs and sodas and avoid eating after 6pm you won’t need an antacid which also interferes with your meds.

    1. Hi SR,

      Thanks for your comments.

      That’s an important point for women with ADHD who are likely in perimenopause or beyond: Hormones matter!

      Even for younger women with ADHD, some find that the stimulant doesn’t work as well certain times of the month. Some experts recommend a bit larger dose of medication at such times.

      And, absolutely, processed carbs can have an acidifying effect.

      I love your “taking charge” of all these issues. It’s so important!

      Thanks,
      Gina

  8. My daughter is 9 and has taken Quillavent for 3 years. She does have less appetite. We make sure to watch meals and I provide a protein rich breakfast and I give her DINNER (Full meal with meat, veggetables and starch) when she gets home from school (or when she gets hungry ~4pm). I also keep protein shakes and nutrient rich snacks for her. Our deal is… you have to eat or drink a shake for Breakfast and lunch…… if you eat dinner you can have any snacks you want. (She loves jerky, veggies and popcorn so she has good natural habits)

    Sleep was an issue from infancy!!! (seriously!!!) We give her 10 mg of melatonin 30 mins before bed time. It takes her a LONG time to fall asleep. The first week of quillavent resulted in 3 nights of NO SLEEP. But it balanced out.

    I do give her days off…. if she is not at school and sleeps in, I will give her a day off. (It is rough for me, but I have to balance the impact on appetite and sleep. SHE HAS TO EAT and SLEEP.) She developed food phobia last school year resulting in weight loss . We took her off the quillavent for 2 months. Her school work, behavior, personal grooming were just horrid!!! She has a 139 IQ and knew that she was “gross” and “messy” and “bad”…. it was a sad time for her despite her high energy. When we got the weight up and put her back on her meds… we had a stomach ache for about a week, but she almost instantly felt better about herself as her schoolwork, personal grooming, and behavior returned to normal.

    I do worry that 3 years is a long time to be on a med. So, I give her the time off to see if there is a difference. I watch food, sleep, weight, moods…. I keep a journal. It is SOOOO worth it!!!

    1. Hi Kelly,

      Kudos to you. It sounds like you are a very diligent and observant parent!

      I do see some red flags here, and I’ll share some info that might be helpful.

      Are you sure that she doesn’t have some anxiety (quite common in folks with ADHD) and that the stimulant isn’t exacerbating that anxiety? Maybe even pushing her into an eating disorder? I’ve seen too many young girls, in particular, develop eating disorders from poor prescribing.

      She shouldn’t have to tolerate those side effects. Moreover, I’m not sure that consuming that many protein drinks is healthy.

      It is very important for the prescribing physician to treat the FULL RANGE of symptoms. That can include depression/anxiety (“serotonin” issues).

      Most people with ADHD seem to need a second medication, with the stimulant. That might be a low dose of Strattera (which can also help with sleep) or an antidepressant.

      A low dose of stimulant at night could also help her brain get “organized” to sleep.

      10 mg of melatonin is a very high dosage. It is a powerful hormone and not simply a “sleep aid.” I know that it’s commonly recommended by other parents, but really, melatonin is not the answer for everyone, and it should be given only with great care to a child, and almost never at that high dosage.

      Good luck!
      g

  9. Our 8 yr old 50 lb. son has been on Quillivant 3 mg for the past 15 months, and it’s helped enormously (ADHD with some ODD). But recently he’s been acting up the last hour of the school day, and every ‘specials’ teacher is complaining (those are the end of day specialty teachers like art, music). I told our psychiatrist yesterday but he didn’t seem concerned nor did he say anything about dosage.

    I’m unclear if a slightly higher dosage (like 3.5 mg) would help last the full school day? I will discuss again with our doctor but just wanted to understand if more Quillivant necessarily means it will last a little longer.

    He does very well overall on the medicine but isn’t eating much during the day, and his size is already small – so we are certainly worried about his growth and weight, and wouldn’t want to give him any more medicine if that would mean less eating. Welcome your thoughts!

    1. Hi Emily,

      First, I’m glad your boy is doing well with this treatment.

      It could be that the Rx is wearing off at that last hour. Or, I wonder, if he’s not eating much, if he’s “running out of steam” (as in nourishment).

      If he truly has OCD, it could be that the stimulant, over time, is exacerbating anxiety. This can make the return to baseline, when the Rx wears off, more rocky.

      From what I know, it’s unlikely that a higher dosage would last longer. More likely, it would push him out of his “window” of effective dosage, creating more side effects and not even lasting longer.

      Did he eat well before beginning medication? If so, it might be that the anxiety boosted by the stimulant is interfering with his appetite.

      Then again, I know plenty of young children without ADHD who are much more interested in the world around them than what’s on their plates. 😉 For those kids, and those with ADHD, I think it’s really smart not to allow the child much sugar at all. It can have a way of spoiling the “taste” for anything else.

      good luck!
      g

  10. My 15 year son has tourettes and ADHD and aspergers with oppositional defiant. He was taking the quillachew and liked it but insurance wasn’t going to cover it. It still cost too much with the savings card. But the insurance will cover the Quillivant XR and apply the savings card. After the first two doses of Quillivant XR his head and neck tics are back pretty severe. Should I stop it or keep trying it? Could it just be a coincidence and he maybe getting some tics back? He had the neck tic in Dec.

    1. Hi Michele,

      How frustrating for you both.

      I don’t really know what to tell you. Has anything else changed?

      Is he getting enough sleep? Eating well?

      Maybe try a lower dose?

      Gina

  11. My son has been taking quillivant xr liquid form at first this medication was a life saver expecially in school i mean always doing well while taking it he is 7 years old the dosage isnt the issue here at all hes on the lowest dose. Well the side affects were he would refuse to eat would result in vomiting he would take to himself or maybe he had seen something that wasnt actually there…he was in the shower and he had gotten my razor and cut his thumb i asked why he did that he said his brain told him to and he had a urge to do it. He has never done things like this before ever his eyes always look glazed over and wide awake hes been on 1mg…and sometimes he is great normally at school hes wonderful guessing at home he gets bored not as much stimulation not sure but its very odd behavior so ive taken him off. We tried a non stimulant and he was always sleepy and we gave it at bedtime. Not so sure medication is for us i am afraid to even try anything else expecially after the razor incident

    1. Hi Bri,

      How disturbing for you. And yet he was doing so well in school.

      In a tiny minority of children, a stimulant can cause hallucinations. But I don’t know why.

      That is a puzzle. But our human brains are like snowflakes; no two alike.

      Perhaps he has a co-existing condition. Or maybe a difficult birth. I’ve recently learned that schizophrenia is more common than most of us realize, especially in the milder forms.

      I wish you all the best in helping him.

      g

  12. Pingback: ADHD Medications Guide, Part II - ADHD Roller Coaster with Gina Pera

  13. Hi my 9 year old daughter is a very strong willed little girl. I took her to a Educational Psychologist and then a Paediatric Neurologist for ADHD and dyslexia testing as her IQ tested high but she not performing as well as she can. Both times they DID NOT diagnose her with ADHD. She has problems concentrating in a class environment but does great one on one. SO if I do homework with her I have no issues she does it but she likes me being there and explaining things. So dr said to me I can try concerta 18mg for a year +- for class time no weekends or holidays. she has no problem with any of us at home and does what I ask. After a month of debating if I must use it cause if they don’t have ADHD doesn’t that mean that don’t need it. but I had lots of work to do she was about 1 and half years behind because she has no interest in school. (that I also think had to do with previous teacher she had ). when school started after holidays I started it. o my goodness what a mission to get this pill down. she’s never had pills before so thought it was that. 30 min every morning. emotional and crying and chocking spitting out try again. its been 3 months of this and last week Monday I just had enough and told her to leave it. I cant watch her cry anymore. it is heart breaking. As of effectiveness, the teacher reckon its helped allot in class for concentration. her marks are about the same as term 1 when she wasn’t on it. but she works very hard. but concentration is what we needed it for and I feel I have to explain less things in afternoon about the work she did in class. its worn off by time she gets home. but that not issue as she works hard for me and does her work good. my question is do I bother going to patrician for something ells. that I have to stress about. or is there something like concerta. is this liquid form the same? what I did like is she didn’t have major side affects as I read, she doesn’t eat school no appetite but once she gets home she eats good again. she is a bit more emotional but was controllable.

    1. Hi Val,

      I appreciate your concerns. How nerve-raking it must be.

      First, that educational psychologist and pediatric neurologist might not be qualified to evaluate for ADHD.

      Typically, neurologists are trained in pathologies you can “see” — epilepsy, brain tumors, head injuries, etc. They don’t always know much about ADHD. And sometimes what they know is wrong.

      Educational psychologists are dicey, too. Sometimes they are all about the “behavior strategies” and are poorly trained in the underlying neuroscience — and the effects of medications.

      In other words, all specialists have their biases.

      ADHD is complex. It is associated with many other conditions. To truly understand ADHD, the specialists must have undergone particular study. It’s seldom taught in graduate school or even medical school.

      Your best bet is a board-certified pediatric psychiatrist.

      But if your current doctor is willing to work with you, check out this Quillivant. Read the comments from other parents here.

      Not every medication for ADHD is going to work for every person with ADHD. You might have to try a few. Another one that doesn’t involve swallowing is the patch, Daytrana.

      If she has no appetite during the day, that might be a sign that the dosage of Concerta is too high (it doesn’t come lower than 18 mg, though), or she also has an anxiety-type disorder.

      Half the children with ADHD have a second condition.

      The treating physician must treat the range of symptoms. Not just “throw a stimulant at ADHD.”

      My book is not geared specifically to children, but most of the information will apply to the lifespan. Also, my chapter on medication are among the best and most thorough. They should help you understand the methodical “step by step” that selecting the right medication regimen requires.

      http://amzn.to/2dZMFqb

      Good luck!
      g

  14. This site is a great resource! Thanks for all the valuable info. Our 12 year old son has ADHD Inattentive Type I. He has successfully been on generic Methylphenidate XR in capsule form for three 1/2 years. He is still unable to swallow pills, so we have always broken the capsule over applesauce and taken it that way.

    Since starting middle school and an earlier morning routine now (two hour earlier start then his elementary) we found that the capsule form was wearing off too quickly in the evening and making him revert to preschool type behavior when crashing off it during the early evening hours.

    I found Quillivant XR online and our pediatrician prescribed it as a good alternative as the liquid form will allow us to control dosage and maybe give a booster dose in the afternoon. But our local CVS is only saying the copay card is $20 off the total cost, not just $20 for the Rx as the card states. They ran it both with and without our insurance to compare costs. Without insurance it would have been $150 out of pocket or $130 with the savings card. With our insurance (Blue Cross/Blue Shield) it is $121 out of pocket or $101 with the card. I am frustrated because I cannot get a live person on any of the telephone numbers listed with the card literature, nor the # listed in this blog thread.

    Can anyone help? Thank you!

    1. Hi Lisa,

      I just spent several minutes I’ll never get back, on hold with Pfizer.

      One important thing to note in the fine print: Not all pharmacies participate.

      In my experience, CVS is one of the worst pharmacies out there. They continued to push the downgraded Concerta generics on patients, and that was pretty shoddy. Maybe they’re still doing it. Who knows.

      I would try Walgreen’s or any other pharmacy, if you have access.

      There seems to be a different benefit if your insurance cost is $150 or above. Check the details below.

      ________

      By using the Quillivant XR and QuilliChew ER $20 Co-pay Card, you acknowledge that you currently meet the eligibility criteria and will comply with the Terms and Conditions described below:

      Co-pay cards are not valid for prescriptions that are eligible to be reimbursed, in whole or in part, by Medicaid, Medicare, or other federal or state healthcare programs (including any state prescription drug assistance programs and the Government Health Insurance Plan available in Puerto Rico [formerly known as “La Reforma De Salud”])
      Co-pay cards are not valid for prescriptions that are eligible to be reimbursed by private insurance plans or other health or pharmacy benefit programs that reimburse you for the entire cost of your prescription drugs
      Insureds must be 18 or older; patients must be 6 or older
      Eligible insured patients may pay no more than $20 for each prescription
      If your out-of-pocket costs are $150 or less, you will pay $20
      If your out-of-pocket costs are more than $150, you will save $130 off your costs
      Savings are limited to $130 per 30 days for up to 12 uses within the offering period.
      Card may be used once every 30 days. Maximum savings of $1560 per year
      Each patient is limited to one active co-pay card at a time during this offering period and the co-pay cards are not transferable
      Cash payers will receive up to $100 off each prescription fill
      If your out-of-pocket costs are $120 or less, you will pay $20
      If your out-of-pocket costs are more than $120 you will save $100 off your costs

      Savings are limited to $100 per 30 days for up to 12 uses within the offering period
      Card may be used once every 30 days. Maximum savings of $1200 per year
      You must deduct the value received under this program from any reimbursement request submitted to your insurance plan, either directly by you or on your behalf
      The co-pay card cannot be combined with any other rebate or coupon, free trial, or similar offer for the specified prescription
      This co-pay card is not health insurance
      The co-pay card will be accepted only at participating pharmacies
      This offer is good only in the United States and Puerto Rico
      Pfizer reserves the right to rescind, revoke, or amend the co-pay card without notice
      Offer valid from 7/1/15 to 12/31/16. No membership fees apply
      For help with the Quillivant XR and QuilliChew ER $20 Co-pay Card, call 1-877-776-7246, or write:

      Pfizer, ATTN: Pfizer ADHD Medication
      PO Box 4934
      Warren, NJ 07059-6600
      http://www.pfizer.com

  15. Pingback: Adult Adhd Adderal Doseage

    1. Hi Denise,

      It’s really impossible to say. It depends on the nature of your anxiety. Sometimes, one of the SSRI family of antidepressants might help (that would include medications such as Prozac, Zoloft, Luvox, Celexa, etc.). Sometimes, Strattera (a first-line medication for ADHD) will help, but typically at a low dose and combined with a stimulant; higher doses of Strattera seem to create unwieldy side effects for many people. Some people with ADHD and anxiety benefit from Buspar (along with a stimulant).

      Those are just some ideas. Your physician really should be working with you to tease out these issues. But I know how difficult it can be to find expert psychiatric care.

      g

  16. Hi Meredith,

    I’m sorry to hear that the pediatrician wants to keep going with what might be a bad idea, piling on another Rx.

    I’m going to ask you to try an experiment.

    Print that graph, in my post, depicting the profile of Quillivant and the MPH Rx. Then sketch where your son’s “profile” on the Quillivant plots.

    For example, you say that from 7am to about 1pm, he’s like a “spaced-out zombie.” When we hear the word “zombie” associated with methylphenidate (the active Rx in Quillivant), we think “too high a dosage.”

    Quillivant XR contains approximately 20% immediate-release and 80% extended-release methylphenidate. It could be that the 20% immediate-release is too much for your child. He might do better with an Rx that ramps up more slowly or with a lower impact.

    If there’s not a good reason for sticking with Quillivant (for example, your son doesn’t have trouble swallowing pills), I’d try something else if he were my child. There are too many other options to not try for a better “fit.”

    The good news: He has a few hours of awesomeness. That means that MPH might be a good choice for him, if you can just find a better “fit” with a different choice of MPH (Concerta, Ritalin, Ritalin LA, etc.).

    If swallowing is a problem, there are still other choices. Unfortunately, the patch Daytrana, seems to be in shortage now. But there is also an older Rx called Metadate, which can be sprinkled in food.

    My advise is to get some graph paper, mark out the hours, and perform some trials.

    I would sketch out what I mean but my scanner is on the fritz this week!

    Good luck!
    g

  17. My son is almost 6 and recently switched the the Quillivant from regular Methylphenidate 4mg BID. He doesn’t mind the flavor at all but seems much more agitated earlier in the afternoon and then even worse at home. He has had a major change in routine from school to summer camp and just not handling it well. He is currently on 3 ml or 15 mg of Quillivant now and I’m thinking of going to 5. His Pediatrician says he hasn’t seen anger being a side effect thus far with the meds but we definitely are. At camp today he ran out of the gym across the road to a field, wasn’t listening to counselors and was calling them stupid. He NEVER acted like this in school and or on the liquid IR release meds. Help!!

    1. P.S. Jessie, another thought, which I just added to the post:

      Note that the Quillivant XR avoids the “roller coaster” ups and downs that are so common with the IR products.

      It’s worth noting that other extended-release methylphenidate options, such as Concerta, also show more sustained and smooth profiles. And, so do some amphetamine-class stimulants such as Vyvanse.

      At the same time, this profile might not work best for you and your child. For example, look again at the profile for the immediate-release (IR) methylphenidate oral solution. See that “spike” between 5 and 10 hours (on average)? That might be is exactly what’s needed for some folks—an extra boost of the medication. Compared to this, Quillavant starts a steady decline at about 5 hours.

      Each person will have a profile preference, either due to cognitive demands during the day or simply the way his or her body metabolizes the medication.

    2. Hi Jessie,

      Poor kid. Poor mom.

      The anger could have many causes; one might be a “rebound” effect (where the medication wears off and symptoms are worse than at baseline).

      Why did you switch from the MPH 4 mg? Was it working fairly well, or was there a similar effect?

      Did the Q work well for a few hours but then took a nose dive? Or did it not work well at any time?

      It might be that it’s simply not lasting long enough. Even though it’s supposed to last X hours, that doesn’t mean every individual will experience that.

      It might be that it’s exacerbating some co-existing condition (anxiety, depression, bipolar, etc.).

      Citric acid in all forms can interfere with effectiveness of stimulants, so that might be the case with liquid MPH as well. So I’d experiment with eliminating orange juice, fruit roll up, etc. Check labels for citric acid. You could confirm this with your pharmacist.

      g

  18. Jeanie Savoie

    My 9-year old son has been on Quillivant XR for 1-1/2 years. He takes 7ml in the am, 4ml at lunch and 3ml after school. Our pediatrician is wanting to switch him to a different medication since he is taking the maximum dosage allowed and showed increased outburst of behavior within the last few months. What are some medications that are similar to Quillivant XR? I know from research that Concerta is not covered by our insurance plan. 🙁

    1. Hi Jeanie,

      There are many reasons why even the maximum dosage doesn’t seem to be covering the range of symptoms.

      One is that the symptoms are not ADHD but from a co-existing condition (anxiety, depression, etc.)

      Another is that he might be metabolizing this stimulant differently than he would another stimulant.

      You can read about the medications used to treat ADHD and co-existing conditions here: https://adhdrollercoaster.org/tools-and-strategies/all-about-medications-for-adhd-part-i/

      Best,
      Gina

  19. My son has been using Quillivant XR for over a year now with good results. We did just increase his dosage. He is now 13 – older and bigger!
    As for insurance, we have United Healthcare. Last year the $20 kicked in after we had met our plan deductible. Prior to that it was a reduced cost. Now for this current year we had to get preauthorization (coordinated between the physician and the insurance company) before United Healthcare would allow us to use Quillivant XR. Right now we pay $88 per month until we meet our deductible.
    Hope this information will help someone!

    1. Hi Kim,

      Thanks for sharing your experience.

      Two things:

      1. Sometimes the child will need a LOWER dose of medication as the child grows. That’s because younger children have faster metabolisms, and the medication is metabolized more quickly. Also, dosage has nothing to do with weight, though I know many MDs have that mistaken impression.

      Here’s one of my “myth-busting posts” on that topic: https://adhdrollercoaster.org/myth-busting/myth-7-thats-a-lot-of-medicine-for-a-small-person/

      2. The particulars of insurance policies depend on what the employer has negotiated for and is willing to pay for, if it is a group insurance plan.

      in other words, United Healthcare might be the health-care insurance provider but different group plans will have different rules, such as around preauthorization, etc.

      Just FYI.

      tx
      g

  20. My 5 year old son started Quillivant XR liquid about four weeks ago. About an hour after the morning dose he becomes extremely irritable. He gets angry, defiant, and aggressive. When I try to correct his behavior, he runs and hides and yells at me. He gets extremely emotional and irritable. He has gone from 2ml, to 3ml, to 4ml and the higher the dose, the worse the explosions. About two hours after the morning dose the aggression and irritability calm down but he remains very emotionally sensitive all day. The defiance and aggression kick back in after lunch. I’ve tried different dosing times in the morning and the “reaction” is consistently an hour after he takes it. I stopped the medication and have not seen these behaviors return.

    1. Hi Kellie,

      It’s so important to get the diagnosis right. Plus, any co-existing conditions.

      If the explosions get worse with each extra ml, I’d be inclined to abandon that RX and look at other avenues.

      good luck,
      g

  21. I have a 7 year old son born with Down syndrome and more recently diagnosed with ASD as well. He has lots of bad behaviors. He is mostly non-verbal, not potty-trained. He pushes furniture, throws things, etc.
    We started him on Quillevant yesterday 2mg in the morning. Didn’t notice any change yesterday other than he would not go to sleep. Finally fell asleep about 10:30 but woke at 2am wanting to play. He finally fell asleep again for maybe an hour but up for the day at 6am.
    I dosed him again this morning and today he has been awful, more hyper than usual. Here it is almost midnight and he is still awake!
    Is this normal at first? Or should I stop giving it to him? Of course it’s the beginning of a long holiday weekend…

    1. Hi Julie,

      OH, that doesn’t sound good. 🙁

      You know, I’m not aware of any studies that examined treatment for ADHD as co-existing with Down Syndrome. If it were my child, I have to say I think I would discontinue a medication that interfered to that degree with his sleep and made him more hyper instead of less.

      Are you confident of the diagnosis? And have other factors been ruled out?

      From what I’ve read here, it’s important to exclude other possible causes of ADHD-like symptoms children with Down Syndrome: for example, hearing and vision issues that interfere with attention. Also, apparently, these children are more likely to have celiac disease, which would require significant dietary modification. And thyroid problems are more common, too, resulting in either listlessness or agitation.

      http://www.ndss.org/Resources/Health-Care/Associated-Conditions/ADHD-Down-Syndrome/

      I wish you all the best in finding some workable solutions.
      g

  22. My son (8) has been on Quillavant XR for a little over a month now and at least once a week goes to the nurses office hysterically crying that his stomach hurts. I give him his 4ML dose with apple juice in the morning after he eats his breakfast. Is this normal and will the stomachaches eventually stop? I called the doctor and she told me to stop the meds and see if the stomach aches still persist. After 2 days without the meds the teacher pulled my husband aside and said he was very misbehaved and couldnt sit still and did we stop the meds? At that point I made my own deicision to put him back on it and after a week of no stomachaches,, got a call today from the nurse!! HELP!

    1. Hi Mary,

      Poor little guy!

      Have you tried other type of stimulants, or just the Quillivant?

      Have you tried the Quillivant without the apple juice? That’s very acidic and sugary. (Does he do okay with the apple juice otherwise?)

      Does your boy have signs of anxiety/depression or other GI problems? The stimulant might be exacerbating that. Sometimes a second medication is necessary, to address those issues.

      I’d call the doctor again and report what you’ve written here and mention my feedback as talking points.

      Good luck!
      g

  23. We have been giving our 6 year old daughter Quillivant for 6 weeks. The first 10 days were amazing! Amazing! Then…. About day 12, it wasn’t working as well anymore. She was showing the original symptoms after about four hours and the rest of the afternoon at school and home are tough… Again. The pediatrician recommended upping the dosage from 2.5 ml to 3 ml. We tried that today and it isn’t much better. Do you have any advice of what we should do now? We are so sad that the first 10 days were amazing and now things aren’t the same…
    Thanks!

    1. Hi Rebecca,

      It’s always helpful to be more precise in describing what you mean by “amazing” and “wasn’t working as well anymore.”

      Can you provide some examples?

      g

    2. Yes! She was happy and seemed so content. She would have normal conversations that were on a topic and really ask questions. She was compliant with my requests and didn’t have one single fit. She would actually play with her toys instead of stuffing things in bags, etc. and running from room to room. She was completing work at school and participating in class discussions. She actually would answer questions and help her friends instead of bothering them. It was so refreshing! Now… We are starting to see more of the old behaviors starting to emerge…..
      Thanks for responding. My husband and I are at a loss.

    3. Hi Rebecca,

      Ach. Heartbreaking.

      You know, some adults can have a similar reaction to medication. It’s as though the “novelty” of what the medication can do for them starts to fade. Maybe something else is going on with your girl, though. It could also be that she needs a higher dose. More about that below.

      To be even more specific, have you noticed the same behaviors returning, or could it be that she’s more irritable, depressed, cranky, listless, etc.?

      Children with ADHD often have a second condition, at a rate of about 50 percent. In other words, about half the children with ADHD will also have depression, anxiety, bipolar disorder, or other conditions.

      The stimulants can sometimes exacerbate those co-existing conditions. So, for example, the stimulant might exacerbate anxiety or depression that interferes with sleep and mood. Many children and adults with ADHD do best on a second medication, in addition to the stimulants.

      But there are other avenues to explore. For example, did her diet change about the time the medication seemed to have stopped working? Did she start consuming citric acid during the time when medication should be active? This can interfere with some stimulants. And there’s citric acid in many products, not just orange juice.

      This isn’t “evidence-base” and is tricky to test (because most docs don’t understand it), but some people will have a lowered response to the stimulant after a while because they are simply not producing enough of the building blocks of these neurotransmitters.

      Neurotransmitters are derived from amino acids, the components of protein.

      So, we can ask, is she having protein the morning? (Notice, I didn’t say “high protein”. People get that confused a lot. But protein as part of a balanced breakfast is crucial.) Eggs. Sausage. Bacon. Turkey/chicken sausage. For many kids with ADHD (and others), milk and cereal will be the worst breakfast. Same with yogurt or bagels. These are all metabolized like sugars. Dropping them off a metaphorical cliff a few hours later.

      Some people will need to take it a step beyond consuming enough protein. A precursor to dopamine is an amino acid called L-Tyrosine. In other words, it’s a building block of dopamine. Some people supplement L-Tyrosine for a while to support medication efficacy. Here’s some information on it: http://www.webmd.com/vitamins-supplements/ingredientmono-1037-tyrosine.aspx?activeingredientid=1037&

      All that said, it could be possible that a still-higher dose will have a positive effect. 20 mg/4ml is a starting dose. Not the maximum dose, of 60 mg (12 ml). Here is information from the company website on dosing (1 ml = 5 mg):

      Starting dose is 20 mg which can be titrated up or down, weekly, in increments of 10 to 20 mg up to a maximum daily dose of 60 mg. Reduce dosage if a paradoxical aggravation of symptoms or other adverse events occur. Discontinue if intolerable side effects develop or after one month if improvement is not seen after appropriate dose adjustments.

      https://www.pfizerpro.com/product/quilli-brands/quillivant-xr/support/dosing-calculators

      So, don’t panic! Consider the above, talk with your doctor, and keep going!

      I hope this helps,
      g

    4. Wonderful information!! Thank you! We will definitely take your advice with diet and talk to her pediatrician! We are adding protein to her breakfast in the morning!! Thank you! Thank you!

  24. This medication was the first we tried on my 6-year-old son and we saw results on day 2 and it has been wonderful.
    I have successfully used the $20 copay card in Jan-Apr this year at both CVS & Rite Aid. Today suddenly, the price after insurance and copay card was $70. After digging into this, because I work at my insurance company, I learned that the actual cost of Quillivant XR liquid (amount pharmacy pays for the drug) DOUBLED since last month! Last month the total cost for 120ml suspension was $216, with my insurance paying 50% because it is a non-preferred brand. Then the copay card applied, dropping my cost to $20. This month, my cost is $70 because my commercial insurance copay is $200 and then the copay card will only reduce cost up to a maximum of $130 per Rx, leaving me paying $70 now instead of $20.
    Now that my son is hooked on it, doing SOOO much better in school and every other aspect of life. I am blessed that I can at least pay this for the rest of the current school year, but what if this happens again?!? I will be talking about a cheaper equivalent next month at my son’s yearly physical for sure. I feel like I’ve been lured in and then taken for a ride now that we found something that works so well and then they double the price.

    1. Hi Robin,

      First, I’m glad your son is responding well to the medication.

      Second, medication prices often fluctuate, for a variety of reasons. There is actually a shortage now of Daytrana, so perhaps that explains it. The DEA controls how much of the raw material is allowed in circulation for stimulant medication. It’s a problem, as more people are diagnosed and treated with ADHD. This might be something to talk with your congressional representative about.

      Yet, insurance companies and pharmacies are involved, too, so anything is possible. Pharmacies actually have higher profit margins on generics, so some pharmacies will push in that direction. Insurance companies, too.

      In the grand scheme of things, $70/month is not a large price to pay for your child’s success and health. But I understand that many people have limited budgets.

      When that savings offer expires, perhaps the company will start a patient-assistance programs. It might already have one, beyond the savings card, but I couldn’t find it. Maybe you want to call the patient assistance line: http://www.daytrana.com/

      Otherwise, I always encourage folks to check out any mail-order prescription benefit; that typically offers substantial savings, and fewer hassles.

      Good luck,
      g

    2. What pharmacy do you use? I used the discount card at Walmart and it still cost over $80.

    3. Rite Aid mostly but it worked at CVS too. I used it last week at Rite Aid and my cost was $20.

  25. Hi Gina,

    Thank you so much for taking the time to answer these comments. Indeed, my husband is the one with ADHD! And he definitely does not have the patience to troubleshoot the issue. One big issue with my son is that he is extremely sensitive to medications and it is hard to get to the typically active dose with him. He will develop those very rare side effects or side effects that haven’t even been reported.

    He already takes a tiny dose of Sertraline. We started when he was 6 to try to address some of his “OCD-type” behaviors. Unfortunately he is extremely sensitive to medications. At the time, we started with a dose of 12.5 mg (1/2 of a 25 mg tablet, which we would crush and put in food). This caused major respiratory tics and facial tics, and also coincided with the occurrence of his only seizure episode (partial complex). But we did notice that his mood seemed improved, that he seemed happier. We cut down to 1/4 of a 25 mg tablet, so 6.25 mg daily. There were no more tics or seizure and he still seemed happier, so we kept that dose, although it didn’t help much with all the ritualistic behaviors. That was 2 years ago. About 9 months ago, we tried to increase the Sertraline dose again to 12.5 mg and facial tics resumed at a high frequency. He would drop his jaw and freeze for a few seconds, every 15 min of so. So we went back down to 1/4 tablet.

    About 6 months ago, we started to try and addres highly impulsive and disruptive behaviors. It is not aggressivity, it is like a destructive tornado around the house. He runs around and grabs bins, glasses, any type of containers etc, and dumps their content onto the floor, takes frames down the walls, climbs onto furniture etc. tears up books, etc.; he doesn’t stop. At the time he would also disrobe in public – you could tell he found it very funny- and would urinate in odd places. We started with Guanfacine (a small dose too) but that caused major mood issues, as he was crying and crying, some days for hours at a time. So we stopped after a week. This is when we tried Ritalin, at 2.5 mg daily up to 5 mg, which worked for a while. But afternoons were tough after school so we added 5 mg in mid-afternoon.

    Then recently he started to show very disruptive behaviors at school, and more impulsivity (ran out at home and at school). So his psychiatrist suggested to switch to Quillivant to try and even out his levels throughout the day, with the effects I have described in my first post – high emotional lability, uneven effect of medication throughout the day, as he alternates between being calm (just right) highly impulsive and passive, irritability, increased OCD-type behaviors, and at the end of the day huge rebound effect; decreased ability to fall asleep and earlier wake up time; highly decreased appetite during the day.

    I had thought about the points you mention regarding the difference between the variations of methylphenidate. I wasn’t sure that it could cause such a drastic difference between Ritalin and Quillivant (I think I internalized the fact that my husband thinks I over-analyze things) so I am glad you are raising these points. In any case, whatever the reason, there seems to be something with Quillivant that doesn’t go well with my son. We didn’t have such drastic effects with Ritalin and we never tried increasing his dose from 10 mg up, nor did we try giving him 3 doses a day; who knows, a mid-day might help. His Ritalin is a liquid solution so we could easily titrate it up to monitor side effects. From the trial with Quillivant, I have the feeling that there may be a window somewhere between 15 mg and 20 mg where we might find an acceptable benefit/side effect ratio. As for SSRIs, we never tried anything else than Sertraline, so it might be good to have a discussion with his psychiatrist about it. Thank you for this suggestion!

    We are doing the 25 mg dose for the weekend, then depending on what happens I will talk with my son’s psychiatrist to see how we can move forward. Thank you so much for the discussion! It is really helpful.

    1. Hi Melissa,

      I suspect the most valuable assistance I can offer you is to validate your good sense. 🙂

      It sounds like you are doing a great job of tracking and observing. (If you’re not already writing it down—keeping a log of dosage and effect—I would encourage you to do that. But I suspect you are.)

      Yes, even within the same class, MPH, the various choices have different profiles. That is, some take effect quickly and drop off quickly. Some take effect slowly, at a steadily ascending rate. etc. Consider the image in this piece, which contrasts the profiles between generic immediate-release MPH and Quillivant: https://adhdrollercoaster.org/adhd-news-and-research/a-new-ritalin-extended-release-liquid/

      The complications that autism can bring to the picture, of course, is a big factor and not well known to me. I suppose you have looked into dietary issues, supplements, etc. And, I’m sure it’s quite difficult to distinguish between behaviors that can respond to medication and those that are more driven by “hard-wiring” anatomical differences that are associated with autism.

      Best of luck as you continue your efforts to help your son.

      g

    2. Hello Gina! I just wanted to give an update. Once I got really convinced that something was off with Quillivant we went back to Ritalin (short acting version) and so far we have been using it at 7 mg twice daily, with the addition of 0.025 mg clonidine late afternoon as suggested by his psychiatrist. It’s been been working fairly well. No more crazy rebound effect, he is more invested in class during the day, less moody. Hyperactivity and impulsivity are mostly under control, although he still has a few giggly/hyper episodes. I’ll say all-in-all it is working for us. We may increase the Ritalin dose slightly in the future.

    3. Hi Melissa,

      Thanks for the update. I’m glad things are going better for you and your child!

      g

  26. Hello! My son is 8 and has autism. He used to take Ritalin for hyperactivity and impulsivity. He was taking 5 mg Ritalin twice daily (early am and mid-pm), so a total of 10 mg daily. It worked at first, for about 6 months, but then symptoms returned and his psychiatrist suggested we try Quillivant XR at a dose of 10 mg once a day. This didn’t seem to have any effect so the psychiatrist recommended to increase the dosage to 25 mg. I thought it was too abrupt, so instead I increased to 15 mg for 3 days. He seemed to do a bit better at home but not at school, he was more emotional, and he ate very little at school. My husband really wanted to follow the psychiatrist recommendation, so we increased to 20 mg today. His day at school was a roller coaster, with times when has completely uninterested in the activities that he used to like, other times of the day when he did great, others when he climbed on furniture (he has done this at home before but not at school) or wouldn’t sit as usual, some irritability over things that were never a problem before. Besides, he had a terrible rebound effect starting around 5:0 pm through the evening. including “crazy behaviors”, running around, throwing things, laughing like a demented person, etc. he wouldn’t go to bed, and actually has been having a hard time going to sleep since taking Quillivant.

    Moving forward, I want to stay on the 20 mg dosage for 2 more days over the weekend and, if things are the same, ask the psychiatrist to go back to Ritalin and try and adjust the dosage, since we didn’t have such side effects when my son was on it. Am I making any sense? My husband seems to think that I am always complicating things and that I am against medication. He insists we up the dose to 25 mg or switch to risperdone. I am trying to explain to him that we are already at a dosage twice that of the previous Ritalin dosage and that further increasing the Quillivant dose would only make things worst. It just seems to have a completely different effect. I cannot understand the difference in my son’s response to these medications, since it it the same molecule, but this is what we are seeing.

    What is your opinion? It’s OK if you disagree, agree, or anything in between. I am trying to learn more in the hope of finding out what is best for my son.

    Thank you!

    NOTE: there is definitely ADHD in our family. Emotional sensitivity as well, but nothing to the point of warranting a clinical diagnosis, and no bipolar disorder (I do suspect a relative to have an undiagnosed borderline disorder).

    1. Hi there,

      Generally speaking, when people with ADHD have trouble with stimulants as you describe (works at first and then less so, rebounds when it wears off, etc.), it is because the stimulants can exacerbate a co-existing condition. These are most often anxiety, depression, and the like.

      It makes little sense to me, to stop the stimulant and go to risperidone. Does it happen? Yes, all too often. Does this indicate medical ignorance? Yes, all too often.

      Your husband accuses you of “complicating things” but this is a complex subject! Is your husband the one with ADHD? Perhaps he doesn’t have the patience to bit-by-bit tease out these issues.

      If it were my son, I’d choose the stimulant that seemed to work best at mitigating symptoms (not considering the rebound, etc.) and add a medication for irritability/anxiety/depression. My understanding is that anti-depressants are commonly used to good benefit for people with autism.

      There are plenty of people with autism who also have ADHD and depression/anxiety. A combination of medications to address those conditions is generally going to be more fruitful than attempting to find one Rx that does everything without side effects.

      It might take some time to find the right second medication — perhaps an SSRI or something like Strattera.

      Please start at a LOW dose and increase slowly.

      As for seeing a different response among the variations of methylphenidate (MPH) for your son, there is a simple explanation for that. While they all might be MPH, they are delivered to the system in very different ways. There are also other ingredients (binders, colorants, flavorants in the case of Quillavent, etc.)….also, make sure it is brand Ritalin, because generics can add a whole other set of variables.

      I will be posting soon an excerpt from my friend Dr. Martin Kutshcer’s book, “Kids in the Syndrome Mix.” I think if you read his revised version of the book, you will get some good education.

      http://kidsbehavioralneurology.com/

      Good luck!
      Gina

  27. My daughter has ADHD with impulsivity, Was taking 10 mg Ritalin SR and was treating the ADHD but developed eye blinking and tongue movement tics. With liquid quillivant we can lower to 5mg (using 1 ml). Has anyone have experience with that

  28. Just an fyi – the daytrana patch is incredibly hard to find. The manufacturer issued a recall and it could not be ordered. So for awhile, I was relying on locating a pharmacy that still had a box. At this point it seems like they have been depleted, and the daytrana site has extended it’s unavailability until 3rd quarter.

    1. Thanks, Stephanie. I just read that a few days ago. I wonder if it’s another of the DEA repercussions — limiting the supply of the raw materials for these medications. It’s a problem, because the supply hasn’t been keeping up with demand.

      g

  29. Hello all I had posted before about my daughter starting and we are currently at 8ml a day and have seen such a big diffrence at school. It tends to wear off around dinner time and she gets wound up. But other than she is sometimes a little over emotional I think it’s working out quite well

  30. Prior to starting medication my six year old could not sit still, was very impulsive and directions seemed to go in one ear and out the other. Since beginning 4ml of quillivant the hyperactivity has decreased dramatically when the medicine is at its peak point which does help to keep him out of trouble at school.

    However, I’m worried about the personality changes I see both on and off meds. On the meds he seems completely without emotion. He walks around like he’s In a fog. There’s no hyperactivy but he has no personality. He doesn’t laugh or joke, his eyes are blank and he’s just going through the motions. His teachers complain that he’s so zoned out that he often seems to not hear them.

    Around 3-4 pm it begins to wear off and the hyperactivity returns tenfold. He can’t be still, he’s impulsive, can’t concentrate on anything. He also seems excessively angry sometimes, both on and off since beginning medicine. When he gets mad he completely blows up. It also makes him hostile and argumentative both on and off the meds.

    I’ve talked to the pediatrician about all this and she said that the “zoned out” time is just the meds mellowing him out and I should e be concerned. I know he needs the meds to do well in school but I’m very worried about how it’s completely taking away all personality and emotion. I feel like I no longer have my same little boy. It also has caused a huge appetite decrease and daily tummy aches but it seems that might be a normal side effect. I’m just not sure what to do!

    1. HI Lakin,

      Have you tried a lower dose? It might be he’s a slow metabolizer.

      But it could be MANY other things. Perhaps another class of stimulant (AMP) would work better for his neurochemistry.

      Or perhaps Intuniv or guanfancine?

      I hope you’ve ruled out other possible issues, such as food sensitivities, nutritional deficiencies (have you tried giving him some magnesium citrate, especially if he’s consumed a lot of dairy in his life?), poor sleep, synthetic fragrances in the household that might be causing neurocognitive issues, stress at home….

      PLEASE do not accept the pediatrician’s lame explanation. That is NOT correct.

      Seek a second opinion from a child psychiatrist. Your pediatrician is out of her league. Seriously. Your boy deserves better.

      g

      g

    2. Thank you for your reply. We had leaned towards a second opinion. We have seen a child psychologist but not a psychiatrist. The psychologist had suggested intuniv but the pediatrician told me she preferred not to start with the non stimulants. I’m sure he had some vitamin deficiencies as he is extremely picky, living mostly on milk, pasta, chicken and fruit. Zero veggies. I will absolutely look into the magnesium supplement and begin searching for a second opinion. I just worry now that we have been giving him an unnecessary amount of medication.

    3. Hi Lakin,

      Sure, the stimulants are considered the “first line” medications, to it makes sense that the pediatrician would start with one.

      But it seems that she is ignoring these other problems, which indicates that she is not expert (as most doctors aren’t) in finding the right medication at the right dose — AND addressing any co-existing conditions (anxiety, etc.).

      Some people take the stimulant WITH the Intuniv-type products.

      Milk and pasta …dairy and wheat sensitivities might be an issue. Try to get some veggies into him somehow. There are some good books for feeding “picky eaters.” But sometimes it is sensory defensiveness in the mouth that causes some kids with ADHD to reject foods based on texture.

      I would not worry about the unnecessary amount of medication now. Just talk with the doctor about reducing it or trying another type of stimulant. Or something.

      It used to be that we ALWAYS got a second opinion. Managed care and HMOs have made that more difficult. But I’d persevere.

      Also, I always remind parents of children with ADHD that, given the genetics involved, one of the parents might also have ADHD—or even both! It is extremely important for parents to address their own ADHD-related challenges in order to best help their children.

      g

      g

  31. Hello my daughter is 6 and just started quillivant at 4ml dose. Its only been a few days but we have seen no change and was wondering how long should we wait to see if we need to talk to the doctor to raise the dose.

    1. Hi Cally,

      It really depends. Did the physician work with you to establish treatment targets?

      Medication will help with some issues, but other strategies are needed for other issues.

      It’s really important for physicians to help the patients (parents) distinguish between the two. Unfortunately, many do not have time to do this. So, parents must self-educate.

      g

    2. we are trying to do behavior therapy we have tried it in the past and the therapist quit because she wasn’t cooperating with it. I am hoping that if we can see a change with the medicine soon we can get her to cooperate with going to behavior therapy.

    3. Hi Cally,

      It can be pointless do try “behavior therapy” for kids with ADHD whose symptoms leave them unable to remember what they’ve learned, apply them in the moment, etc.

      But my question is…what are the SYMPTOMS to be addressed with the medication?

      There should be specific issues that can be addressed by medication.

      Do you know what they might be for your child? What are your girl’s specific ADHD-related issues?

      That’s what I’m talking about.

      Until you know what you’re treating, you cannot know if the treatment is working.

      g

    4. Just picked up first script it is a dry powder and says add 105 ml of tap water shake well. Also at room temp what is shelf live after mixed.

    5. Hi Denise,

      The pharmacist should have walked you through those details. I would call the pharmacy and ask.

      Or, it might be in the printed material that came with the Rx.

      Good luck!
      g

    6. she has hyperness unable to sit and listen to the teacher. she cannot sit and do the school work. she will instead do her “own thing’ refuses to do anything if she doesn’t want to. she is consistently going at full speed. those are the main things. we are mainly concerned about her at school. at home is not the main concern.

    7. Hi Cally,

      So, it sounds like you have a good handle on how ADHD is presenting problems for her.

      AS the doctor should tell you, the idea is to go up on the dosage, slowly, until side effects outweigh benefits.

      It might be that she’ll do better with a higher dose.

      Good luck,
      g

  32. My son who is 6 years old is 10ml of Quillivant XR in the morning and 4ml in the afternoon. He also takes an additional medication with it called Intuniv.

    Quillivant XR has been life changing for him. He has been on this medication for 6 months and he is a different kid. His grades have drastically improved in school and he is able to sit and focus.

    Mornings are still a little rough right when he wakes up until he gets his medicine in him…. But about 45 minutes later it’s like magic!

    We have tried the following medications:

    Adderall XR 5mg daily

    Intuniv 1mg / 2mg / 3mg daily
    1mg twice daily

    Methylphenidate Hydrochloride 10mg

    Focalin 10mg

    Focalin XR 10mg

    Vyvanse 40mg

    Kapvay 0.1mg

    Fluoxetine 10mg

    Aripiprazole 5mg

    He has seen hallucinations like bugs, snakes, and people who weren’t there with other medications.

    We are so pleased with the Quillivant XR and Intuniv combination. The only downfall Quillivant has is the crystallization of the medicine. We run out before our refill. You can see the small crystals on the bottle.

    Overall: very pleased!

    1. Hi Rachael,

      Wow, you went through all that. And here, so many in the public see giving a child medication for ADHD “an easy fix.”

      They have no idea.

      How great that you even know the dosages. I encounter many people who don’t seem to understand that the dosage really matters. So do the co-existing conditions.

      Congratulations! I’m very happy for your family!

      g

    2. What is the intuniv fir? After quillivant fur the day, the rebound is awful – especially fir my other children. Any advice for late day, night time?

    3. Hi Audrey,

      Intuniv is not a first-line treatment for ADHD, like the stimulants. But it is sometimes used for other symptoms.

      It is basically an anti-hypertensive (blood pressure medication). The mechanism of action in the brain also seems to help some ADHD-related symptoms, particularly for individuals with significant mood, anger, and oppositional symptoms.

      It’s included in this discussion of medications by Dr. Ted Mandelkorn:

      https://adhdrollercoaster.org/tools-and-strategies/all-about-medications-for-adhd-part-ii/

      As for the rest of the day after the Quillivant wears off, there are many different strategies, depending on the individual.

      One is to try a second dose of Quillivant, if it works well.

      It is unfortunate that many prescribing physicians are simply not very competent in treating the complexities of ADHD. The more you learn, the better you’ll be able to advocate for your child.

      g

  33. Hi – my 8 year old has been on quillivant XR and it does work for the ADHD /spectrum disorders. I wish they would change the flavor because every day is a struggle. Ive read a few parents concerned about their children’s depressive mood on it. Our Fabulous pharmo psychiatrist has explained that most likely now that the ADHD etc symptoms are improving , these meds peel away and uncover depression that may have gone unnoticed otherwise- or was thought to be part of the adhd. We are now treating his depression w a cream compound of Zoloft (because he will not take a pill) and I think it’s helping. Also, for those who have terrible rebound experiences in late afternoon, there are shorter acting doses of stimulants to get you through these tough times. Per sleep, we have been using melatonin which is amazing but I fear that it’s a hormone and will have long term side effects. We are trying to get L tryptophan made into a lozenger by a compounding pharmacy , it sounds much safer and I’ve been told it’s quite a miracle.
    This is so rough , so rough, I feel everyone’s pain. Nothing worse than watching your child in pain and the disrupt it causes the entire family. I’m also reading about vitamin B12 and it’s possible positive effects fir children like ours.

    1. Hi Audrey,

      Yes, half of children with ADHD — and 755 of adults with ADHD — will have a co-existing condition.

      Often, it will be depression/anxiety (that is, more on the serotonin end of things). And sometimes this is exacerbated by the stimulants.

      It can be a tricky balancing act, covering all the bases, but I hope you will stick with it and keep trying different doses, timing, etc.

      Yes, melatonin is tricky, and it’s not a sleep aid as much as a treatment for circadian rhythm issues. It’s important to know the cause of the sleep troubles.

      All of us need sufficient vitamins and minerals. I would not recommend B-12 as any kind of treatment for ADHD. It’s best to aim for the full complex of B vitamins via food. Magnesium citrate might be helpful, too.

      Good luck,
      g

  34. My 11-year old daughter’s psychiatrist wants her to switch to Quillivant because the Daytrana patch is unavailable (again) so I’ve been reading the comments to try to figure out what to expect. We’ve had rough experiences with other stimulants because my daughter has tics, but while the patch doesn’t seem to make the tics worse, she gets awfully grumpy in the afternoon and the most serious complaints from teachers are about attitude rather than finishing work. She already takes 40mg Citalopram (tried fluoxetine and Strattera already but they didn’t work) for anxiety/OCD and at our last session the doctor recommended increasing that to 60mg, so maybe that would balance out the upset mood caused by the stimulant? She also takes 1mg tenex 2x/day so I’m wondering if Intuiv might be a better approach than stimulants. Any advice would be appreciated. This has been a long, painful journey and we’re not out of the woods yet.

    1. Hi there,

      It’s very hard for me to comment, especially without knowing the order (and dosage) at which these medications were tried, and in what combinations. Too often, physicians start out these Rx at too high a dose and then abandon due to side effects, whereas a lower dose might work much better.

      If your daughter “gets grumpy” in the afternoon, it might be that the stimulant is wearing off and a second dose of stimulant might be the answer.

      Why is the patch unavailable? Have you tried mail order? If it’s working for you, I would not give up so easily.

      It’s tricky using words such as “anxiety” or “OCD” when the source might be ADHD itself and/or its traveling companions on the serotonin/norepinephrine end of things.

      Does your daughter eat a good breakfast, of healthy protein, fat and complex carbs? (Milk and cereal is perhaps the worst breakfast for children, imho, but especially children with ADHD.) How about lunch?

      Is she well-nourished? Meaning, does she eat from a variety of foods without many restrictions or preferences?

      Is she getting good sleep? Exercise.

      Tenex/Intuniv/Guanfacine is an anti-hypertensive.

      g

  35. Hi Gina: I posted on here back in December about my daughter’s experience with Quillivant. Initially it was OK (it was her first time on a stimulant and doctor and I tried her on it since she didn’t swallow pills). But after a four months, she kept complaining about the taste/aftertaste, the occasional tummy aches and nausea, and it seems to wear off in the afternoon (she got a booster for homework), her doctor and I talked about alternatives. Since she had successully learned to swallow the small booster pill (a 10mg dose of Ritalin), we tried Concerta. First the 16mg and then 32mg. She’s doing much better on it. Pros and cons: Pros- time release seems to work better with her body chemestry and it lasts into the afternoon. But with that is a con, her appetite is very low. She’s lost weight. She doesn’t eat lunch and isn’t hungry at all until early evening. Yikes! This scared me at first (still does!), but she eats well at breakfast and usually at dinner. I have to give her the pill early in the morning, otherwise forget it. No hunger at dinner and she can’t fall asleep. Harder on the weekends to give her an early breakfast and her medicine right after when everyone is sleeping in. Doc knows all this, we’re still checking in every 6 weeks or so to fine tune. Another pro, however, is that homework isn’t as much of a struggle. She used to cry, I would cry, it was so hard. But, now she works through it. Not a breeze, she still drifts off now and then, but she comes back quickly and we move on. She still complains about it (what kid doesn’t!), but she does’t seem to be as frustrated and defeated. She also has anxiety — which I know is all rolled up with her ADHD. For that, my daughter started acupunture, which seems to be working well. She has weekly sessions (tomorrow will be the third) and she’s much more level and balanced and happy. Also doctor prescribed the over-the-counter supplement 5-HTP for her mood. I didn’t want her on the Fluvoxamine that he initially prescribed. Anyway, there’s an update! Thanks for this space to share, and learn from you and other parents.

    1. Hi AL,

      Thanks for the update. I do care about these children I’ve never met — and their parents.

      as I was reading, I’m saying to myself, “anxiety, anxiety, address the anxiety.”

      Then I see that she’s getting acupuncture. If that helps her, great. But please try to keep an open mind if the anxiety re-surfaces, including with low appetite, little “zest” for life, difficulty sleeping, etc.

      I know…one medication seems bad enough for a child. To add another? Unthinkable!

      But it just seems more common than not, that ADHD “travels” with issues on the depression/anxiety spectrum — and/or are exacerbated bythe stimulants.

      Our brains are complicated. Targeting medications is an imprecise science. But let’s just be thankful that we have these options today. I hear from so many adults who suffered horribly as children, teens, etc.

      Good luck!
      best,
      g

  36. My son has been on Quillivant XR for about 2 yrs now. He holds the liquid in his mouth. I’ve even tried the pill & it was scared to swallow it. Is the Quillivant still affective if I mix it with some form of juice?

    1. Hi Andrea,

      You should ask your pharmacist. I know that some types of methylphenidate (the medication that’s in Quillivant, Ritalin, etc.) become weakened by citric acid (such as in fruit juices, vitamin C, etc.).

      If your child has that much trouble swallowing and is also (apparently) taste-defensive, maybe you should talk to your doctor about the skin patch, Daytrana. Some people end up getting irritated by the adhesive (as with most patch-delivered medications), but some do fine.

      http://www.daytrana.com

      best,
      g

  37. We have had great success with Quillivant. Went from 4 to 6 and now 6 to 7. The only complaint is the taste. We have chased it with ice cream and chocolate syrup and even soda (Which isn’t allowed but helped get it down as a special treat.) I have not noticed any negative side effects, only positive. I am interested to see if flavor rx would help at the pharmacy but not sure which flavor would work best with it. Maybe bubble gum? Anyone tried that?

    1. Hi Catherine,

      You mean yours isn’t flavored? I thought the default flavor was banana.

      I know that many of these stimulant medications shouldn’t be taken with citric acid (Vitamin C, found in citrus fruits and used as a preservative in some other food products); it interferes with their effectiveness.

      Ask your pharmacist about the choice of flavors.

      best,
      g

  38. My 7 year old daughter started Quillivant XR back in December at 4 ML. We noticed an immediate improvement in her school behavior, but the problems seem to have gotten worse at home. The doctor bumped her up to 5 and now 6 ML, but the afternoons are still terrible. Berserk is the way I would describe her. Worse than before we started meds at all. I know it’s working, because she is doing so much better in school, but I feel like it’s wearing off too quickly. We don’t go back to the doctor for another few weeks, so I was planning on discussing it then, but has anyone experienced this? I know it’s an XR, but is there an afternoon booster of 1-2 ML that might work? I hate to think of just going up on the morning dose, just to squeeze out a few extra hours at the end of the day, but if that’s what’s standard, I guess we’ll do it. Thoughts?

    1. Hi Katie,

      It might “supposed” to work longer, but it really depends on the individual.

      Most people will need a booster dose of the extended-released medications in the afternoon, unless they are slow metabolizers.

      Too many physicians don’t understand that you cannot make the Rx last longer by giving a bigger initial dose. It confounds on reason and sense. But it happens all the time. 🙁

      Your daughter is experiencing what’s called “rebound.” A second, smaller dose in the afternoon might be advised. But it could also be that the medication is exacerbating anxiety.

      If it were my child, I would try a second dose in the afternoon. Perhaps on a Friday, so that if it interferes with sleep, school won’t be disrupted.

      good luck!
      g

    2. Thank you for the suggestions. I think I will try a second, smaller dose in the afternoon and see how she does.

    3. Good luck. I encourage you to keep a simple chart, noting what time the medication (at what dose) was taken, and monitor results.

      best,
      g

  39. My son was doing well for the four hours 10ml of Ritalin was active in the am. He had some troubles at school in early afternoon from the dip before his 5ml afternoon dose kicked in and then the evening at home was always hard. So a few days ago I asked his doctor about long acting since he’s six now. this is his 3rd day of quillivant. On Friday at school he was more argumentative and distracted. He seems to be acting odd and spacey the last two days at home. He’s only on 2 ml which I read is half the manufacturers recommended starting dose. I’m really hoping a long acting will work for him and he needs a liquid so I’m hoping this is am adjustment period or side effect that could mitigate. Has anyone else heard of similar experiences?

    1. Hi Andrea,

      That might be too low a dose. Especially if your son did well on 10 mg Ritalin. (But you wrote ml. Was your son on liquid Ritalin as well?)

      If Ritalin worked well for him, the physician could have suggested a longer-acting Ritalin (MPH) pill such as Ritalin LA or Concerta. I wonder why the physician switched from a pill to Quillivant.

      g

    2. Thank you for your response. She switched to quillivant because he will only take his medication mixed with juice and even that is a struggle. He is only six and can’t swallow pills.

    3. Got it, Andrea. You know, as a child, I had trouble with St. Joseph’s baby aspirin, so my mother dissolved it in water. I don’t have ADHD, but it’s a hard thing for some kids to coordinate, and ADHD just compounds the challenge.

      I’d keep going up on the Quillivant, to make it approximately the same as the Ritalin that gave good effect. Of course, talk with your doctor….. And, remember that there is a patch (Daytrana). Might be worth trying, but the adhesive creates a problem for some people (though not others).

      Good luck!
      g

  40. Rachel Schultz

    My son is 7 years old and today was his first dose of Quillivant. He has been on no other medications prior. He became very emotional and cried a few times throughout the day. He has always been somewhat emotional, but never crying uncontrollably. Is this an initial reaction that will eventually stop? Has any one else experienced this?

    1. Hi Rachel,

      There could be many reasons for such a reaction.

      For example, has anyone explained to him the changes in perception and cognition that the medication might bring about? That is important. Otherwise, the child (or adult) is left to figure out the confusing and/or disorienting changes.

      For another example, is it possible that bipolar disorder runs in the family? If so, the stimulant might be exacerbating mood-disorder issues.

      I have not heard of the reaction you describe going away with time. Please make sure that he was started at a low dosage, and that the prescribing physician fully evaluated your child for other psychiatric conditions.

      best,
      g

    2. Hello,
      We are experiencing the same…our grandson is 5-years old. He has been very emotional and irritable. I am a behavioral health therapist and we have not Hx of mental health issues within our family…only a Hx of ADHD.

    3. Hi Marie,

      I’m not sure what you mean, that your family hasn’t had a diagnosis (Hx?) of mental health issues in your family, only ADHD? Are you saying that you don’t find ADHD a mental-health diagnosis? Because it is.

      best,
      g

    4. What is the cheapest Pharmacy to get Quiilivant XR at with no insurance? I know the $20.00 card is no more.

    5. HI Denise,

      It’s really impossible to say which would be the cheapest pharmacy. It depends on where you live, the stores available to you, and how they price in that area, etc.

      The company’s website says the $20 card is still in effect.

      http://www.quillivantxr.com/quillivant-xr-co-pay-card

      For more information, it says to call 1-855-478-4597, 9 AM to 7 PM Eastern time, Monday through Friday to speak to a live operator.

      Please let us know what you learn, so others can benefit.

      thanks!
      g

    6. Denise — Call that number I wrote for you. I bet they can best advise you. I’ve talked with a few company reps in this regard, and they usually know the score.

      But yes, if it’s time to pick up your order, that’s what I would do: Present the coupon without hesitancy or question. 😉

      best,
      g

    7. Ops, I see you’ve already tried Target now. $20 sounds better than $80 to me. But of course you don’t want to go without.

      Call that number to get the low-down.

      best,
      g

    8. Target said it will be $100.00 much better than several hundred. Waiting to see if anyone actually only paid $20.00..

    9. Yes, Denise. Katie reports she paid only the $20, with insurance and the discount card.

      It’s worth checking out if that might be the case for you!
      g

    10. Our insurance originally said did not cover , but maybe I will ask again we have United Health.

    11. Hi Denise,

      Even with United Health, there are many different levels of policies. If your policy doesn’t cover the Rx, ask why.

      It might be that you have to try cheaper Rx first, and if they don’t work as well, THEN you can try the Quillivant.

      g

    12. I use the $20 card at CVS. It’s good for one year. I assume (hope) I can get another one at that time.

      P.S. To follow up on an earlier question, I started giving my daughter one mL in the evenings (about 5pm) and it has made a world of difference in her after school behavior. Sleep and dinner appetite have not been negatively impacted.

    13. Hi Katie,

      Yay!!! I’m happy to end my work day (10 pm) on a happy note.

      Isn’t that amazing?

      Good for you! Thanks for being willing to consider my information on the topic. I’m not an MD but I truly do know more than many of them prescribing for ADHD.

      best,
      g

    14. I use Blue Cross/Blue Shield. Before the card it was $128. Now it’s $20 with the card and insurance. I’m not sure what you’ll pay without insurance, but Pfizer has other options for prescription assistance if you qualify. That’s through Pfizer’s website, not the Quillivant website.

    15. Thanks, Katie.

      Yes, I’ve noticed that several of the pharma companies are including discounts used WITH insurance. And there are other assistance programs for people without insurance.

      Thanks for letting us know how it went for you.

      tx
      g

    16. ADHD Is a diagnosis within the DSM-5 correct, although, I am more concerned about the expressed side effects he is experiencing. An again we only have a Hx of ADHD, no mood/bipolar disorders.

      We are concerned how long will the irritability symptoms will be present will the symptoms go away with time. Thanks

    17. Hi Marie,

      Okay, now I think I understand your question. Thanks.

      There are so many possibilities.

      Is there chaos and conflict at home? As you know, ADHD is highly genetic; there’s a good chance one or both parents have ADHD as well.

      Is he getting good sleep? Good nutrition? Have food sensitivities been ruled out? Are there synthetic fragrances in the home, via cleaners, fabric softeners, etc. that can adversely affect cognition and mood?

      Beyond all that, just because he doesn’t have the diagnosis of depression/anxiety/mood, that doesn’t mean he doesn’t also have those, genetically speaking. And if he does, the stimulant monotherapy can excerbate them. I know it sounds excessive, but most people with ADHD will do best on a second medication, to address those symptoms.

      If the dosage is low and he’s still experiencing these side effects, that could be the reason.

      Or, of course, it could be a misdiagnosis.

      lots of possibilities.

      g

  41. After 2 years of trying to modify diet & food colorings, trying natural supplements and then 2 abnormal EEGs, we finally decided to try medication for our 7.5 yr old daughter with ADD. This is the one her neuro suggested and we are starting at 2.5mL’s.

    Would so appreciate any advice on what to expect, what signs to look for, and just overall experience. Thank you so much

    1. Hi Jenn,

      It’s great you tried those other things first (but not for too long), because now you’ve ruled out those factors.

      Your prescribing physician should be working with you, to explain what to expect.

      There is no “one size fits all” advice that can be applied to everyone with ADHD. Much will depend on which symptoms they have, to what severity, and what other co-existing conditions they might have.

      You should identify your daughter’s symptoms—actually write them down—and then check against each symptom each week. Is she doing better or worse in that area. Keep increasing the dosage until “worse” outweighs “better” and then back down a bit.

      If even a low dose results in “worse,” it might not be the right option for your child, or the medication might be exacerbating other conditions, such as anxiety.

      Good luck,
      g

    2. Hi Denise,

      There is no “typical” dosage. The dosage depends on the individual. And it’s not calculated by weight.

      Basically, you want to start with a very low dose, and slowly work upward, paying attention to improvements and side effects

      Best,
      g

  42. My son is 7 and we just started him on Quillvant in the morning and intuniv at dinner time. This is his first time medication and I am so nervous because of all of the horror stories you read online. I really hope that work well together. Does anybody else have any experience of using both?

    1. Hi Lesley,

      Each person is different. Even if that combination worked for some other people, it might not be the best option for your child.

      In general, though, combining a stimulant and Intuniv (guanfacine) is fairly common.

      Also, has your child already been taking the Intuniv, or are both medications new to him?

      I get alarmed when a physician starts two medications at once. It’s not a careful strategy, imho, because you won’t be able to separately gauge the effects for good or bad.

      best,
      g

  43. Houston Hair-Hammond

    Hi I’m 17 and I am currently taking adderall with 10mg I was taking 30mg but my parents are trying to get me off . I really want to go into the military but i can’t go through basic while on any narcotics. Is there any other options for any alternatives I could try?

    1. Hi there,

      Adderall wouldn’t be my first choice. My opinion, after years of observation, is that trying that one last is the best idea, after exhausting the less problematic options.”

      First, I would ask why your parents are trying to get you to stop taking medication for ADHD. Do they understand what it does for you? Are they the ones who want you to go into the military, or are you? Do you have other options?

      The stimulants are not a narcotic, but I understand that the military doesn’t allow recruits to be taking stimulants. (Later, in some cases, in some bases, ADHD treatment is possible.)

      If you really need the medication, there aren’t really reliable alternatives. And the basic good health habits that support brain function can be harder to achieve without the medication.

      But in general, you want to:

      1. Structure your day. Use a planner, checklists, and look at your planner many times a day.

      2. Get enough sleep. At least 8 hours. But more would be better. You’re only 17.

      3. Eat a good diet. No fast food. No French fries or soda. Consumer sugar only in small quantities. Eat protein in the morning, with some complex carbs. (A poached egg and oatmeal is perfect.) Try fish oil or eat anchovies/sardines/canned salmon.

      4. Exercise in the morning. Aerobic exercise.

      5. Avoid videogames and other electronic devices that suck you in and don’t let go.

      6. Take a good all-around multi-vitamin/mineral. Just 1 daily, not the 2-3 sometimes recommended on the bottle. You should be getting most nutrients from food. The supplement is just to fill in the gaps.

      Good luck!
      g

      Good luck!
      g

  44. My 7 year old grandson was put on Quillivant at age 5 to help him with occasional poor impulse control. He is very quiet for 2-3 hours after a dose and then gradually becomes more active. After about 5-6 hours he becomes extremely hyper and very loud. He can’t sit still and runs around wildly. He never exhibited this type of behavior prior to taking the drug. It’s sad and scary that hyperactivity is now worse.

  45. Catherine Cunningham

    We’ve been taking Quillivant since last spring…so about a year. It has been a great experience for my son! Once we got through the initial emotional battle of starting this kind of medication and he stabilized, it’s been smooth sailing! His educational experience has been changed so dramatically for the better 🙂 My only concern, is today we went to get a refill and it was no longer covered by our insurance…going to call tomorrow, but without insurance, it’s $275 for a 180ml bottle. Not sure where we’ll go from here.

    1. Catherine,

      We had a co-pay-card last year, but the terms and conditions have changed. Last year the card saved us about $200, so we were only paying $20 – $35 out of pocket per month. This year the card only saves us about $100, so the price would be $120 and up per month. A nurse at our doctor’s office helped us put in an application to get the medication free of charge due to our income limitations. Ask the medical professionals at your doctor’s office if there is a way to do the same.
      -S

    2. Great idea, Samantha. Most pharma companies have pretty generous assistance programs. But it does take a bit of hoop-jumnping and cooperation from your MD.

      The promotional programs, such as the one you started with, are mostly meant to develop brand loyalty, and so they taper off in benefit after a while.

      Good luck,
      g

  46. So excited to hear about a new liquid ER medication.. smaller amount, only one time per day, and no red coloring! BUT, it is banana flavored and my child does not like banana. I checked with a compounding pharmacy to see if it could be made another flavor, but it cannot. Now I’m waiting for Quillichew to become available. In the meantime, I keep trying different “chasers.”

    1. Hi Sue,

      I hope that the Quillichew works better.

      I wonder if the compounding pharmacist could add another flavor to the banana, like pineapple or orange.

      Meanwhile, I guess you know about the patch, Daytrana.

      best,
      g

  47. Pingback: Top 10 Posts: ADHD Roller Coaster 2015, Pt. 2

    1. I can manage $70 a month for now. It’s just that when you get used to paying $20 and expect to pay that amount and then suddenly have to pay much more because the drug cost doubled, you worry about what if it goes even higher to the point you can’t afford it any longer.

    2. Sure, Robin. We never know what’s going to happen with these medications.

      In the meantime, I’d really look into the mail-order benefit, if you have it. At least you’ll get a longer supply, which could buffer any future fluctuations.

      best,
      g

  48. My son started on Quillivant XR last week and it has been a life changer. He is still his spunky self, but he now gets his work done, offers to help the teacher, and is so proud of himself. He still eats and sleeps well. It was a tough decision to start medication, but the best one we ever made.

  49. Whoa, now I’m tearing up because your experience with your dear friend’s son is exactly what I experience on a daily basis with my daughter. Lots of food for thought. Thank you again!

  50. Thank you, Gina, for taking the time to response so thoughtfully. You provide great guidance. Nothing I say seems to help her understand she’s not “dumb and slow” so I’ll check out the book for help on how to talk to her about her learning differences. She’s so bright, creative and funny….I don’t want to let her anxiety and sadness drown out those amazing qualities.

    1. Aw, poor little thing. That reminds me of my good friend’s little boy, years ago, diagnosed with ADHD. I often was at their house at bedtime, and would tuck him in. I’d say, “You’re my favorite handsome, smart, funny, sweet boy.” And he’d say something sincerely self-deprecating. Broke my heart.

      I understand now that no amount of outside contradiction could invalidate his inner state. And I wish I’d known enough then to talk to him about it. I love my friend, and she was and is a fantastic mother, but I think she didn’t know to take ADHD seriously.

      I can tell you that, today, he is a happy and healthy young man in graduate school. Doing very well. So, never underestimate the power of love and connection.

      Maybe you could acknowledge that yes, she does feel that way. At least validate the experience.

      Also, know that “misfiring neurons” can convince us of many things that aren’t true. It’s scary to think so, but it is a fact. See if a better balance in her treatment helps.

      And do try the book.

      http://www.amazon.com/Attention-Girls-Guide-Learn-About/dp/1433804484

      Best to you and your little one,
      g

  51. Hello Gina:
    My 8-year-old daughter was diagnosed with ADHD (inattentive) June of last year. She was falling behind in school, had trouble reading (thus despised it) and had trouble staying focused in school. My husband and I decided not to medicate her, and went with recommendations of doctor to do CogMed training for working memory (which my daughter also despised!) and worked with her school to make accommodations for her learning style. We also enrolled her in an intensive reading program geared for people with learning differences. But she only improved slightly. I also tried to give her supplements: DHA, Omega 3s, but to no avail since she didn’t like the taste. She’s an extremely picky eater (I know very common with our kids). It’s so hard to give her a proper diet with the right minerals and vitamins she needs…but I digress.
    Well, after some serious soul-searching a year later, we agreed with her doctor’s recommendation and started her on Quillivant XR 10 weeks ago. He thought that was best for its extended-release properties and also because my daughter didn’t swallow pills. He started her on a low dosage (1ml) and over the course of a month we went up to 4ml, which is where she’s at now. Her teacher tells me it’s like night and day, she’s improved tremendously in class. She’s focused and stays on task. Doesn’t have trouble following directions like before. She’s more willing to read and seems to enjoy figuring out her math problems.
    However, she has an underlying anxiety issue that has bubbled up. She is uncomfortable eating with her classmates and nibbles at her lunch in the classroom with the teacher during the lunch hour. When I pick her up at 2:30, she’s ravenous so I give her an early dinner at 3pm, with a snack in the evening. Because her attention was waning during homework, the doctor prescribed a booster of Ritalin (first 2.5 now 5mg) to help her in the afternoon.
    While it has helped her academically, at home my daughter is emotional, distressed, sad, and sometimes depressed. She is negative during homework. Says she’s dumb without the medication, hits herself (not hard) to show she needs to “wake up her brain.” She cries and is very sensitive. Her doctor tells me that the medications are in a way making her more aware of things that make her anxious.
    Doc is now recommending a low dosage of Prozac, but my husband says NO WAY. Doc also recommends one-on-one therapy, meditation and yoga.
    And, now that’s she’s able to take the little Ritalin pill, she doesn’t want to take Quillivant anymore. Her doctor is suggesting we switch to the Conserta generic made by Activis (only this one…I read up on this and realize now why).
    While I’m very happy she’s doing better in school, her anxiety is overwhelming. We were both in tears tonight doing homework. So stressful and painful.
    So my question: are there alternatives to Prozac? Foods, supplements, etc. that help with mood and serotonin levels? Since she’s doing relatively well on the Quillivant, is it crazy to switch to the Conserta generic…are they the same formulation?
    Thank you!

    1. Hi AL,

      I’m so glad to know that many of your daughters’ symptoms responded to medication.

      I’m sorry to hear that she’s experiencing side effects.

      Here’s the thing: Most children with ADHD will have a second or even third condition. These include depression, anxiety, sleep disorders, etc.

      And the stimulants can exacerbate depression and anxiety. It’s simply the way neurotransmitters work in the brain. There is a type of teeter-totter relationship.

      So, what you are describing is extremely common. That doesn’t mean your daughter has to live with it. It means that her physician should be addressing the FULL RANGE of symptoms, which is what he apparently is attempting to do with the Prozac.

      If you try it, you want to make sure it is VERY low dose, to start with. And also experiment with times of day — morning, afternoon, evening.

      Now, therapy could be useful, but not if it’s ADHD-ignorant therapy. Your daughter might need specific guidance in adapting to her diagnosis and the need for medication. This might best come from her parents, though. There are some good books you could read with her. One is by a foremost ADHD expert, Patricia Quinn, MD, and it’s called Attention Girls.

      Just think of how it would be, to be 8 years old, and feel your brain “turning on and off” with medication. Also think of what she might be hearing at school about ADHD. Much less the thoughtlessly stigmatizing stories in the media.

      If it were my daughter, no, I would not stop the Quillivant if she is getting good results from it. Instead, I’d make sure the physician addresses the full range of symptoms (which can include depression and anxiety) but also to help “normalize” ADHd and taking medication, by talking with her and exposing her to the idea of other girls having the same experience. Via the book, etc.

      Good luck!
      g

  52. Michelle Ferrell

    We have a 9 year old son that started out on Adderall that we had to crush and put in his juice in the morning . It worked good for a while, but then it gave him a very bad eye tic where he was blinking none stop and twitching his mouth. He was changed to Intuniv ,which still had to be crush. It did nothing but make him very moody and angry all the time. We changed doctors and was told about a new liquid; Quillivant XR, we thought that was it. This is going to be a life saver and it worked wonderful. He is taking 6ml now, but it is not working. I’m sure his dose needs to be increased, but here is my problem. His insurance will not pay for anything for his ADHD. The coupon card will only cover up to $200.00. With the increase comes the increase in price leaving me to pay around $400.00 a month. He has not learned to swallow a tablet yet, so i’m at a lose on what to do or try. He needs a change ASAP. His is starting to have issues with his school work, he can not stay focused on what he should be doing, and is worrying about what everyone else is doing.

    1. Hi Michelle,

      What do you mean, his insurance will not cover ADHD? What kind of insurance? I’m pretty sure that’s illegal.

      All mental health conditions are supposed to be covered under the Mental Health Parity Act.

      Sometimes the ins. companies require that a psychiatrist prescribes, not a GP. Could that be the issue?

      There is another stimulant that doesn’t have to be swallowed; it is patch called Daytrana.

      g

    2. Gina,
      He has a individual insurance policy (Blue Choice – BCBS) kids policy that we got when he was born. They say since it is not thru a employer (group) plan they do not cover anything like ADHD. I think it’s crazy, but he is grandfather in and he will have coverage until he is 30. We have tried to get government assistance, but they say since that is the only thing wrong he will not be covered. Any suggestions?

    3. HI Michelle,

      Federal mandates on covering mental health the same as other physical issues don’t make a distinction, I WOULD THINK, between group and individual plans.

      I would call your state insurance commissioner.

      I would also file an appeal with BCBS.

      That just cannot be right.

      Also, if you need financial help with the medications, most of the pharmaceutical companies have generous programs.

      Good luck,
      g

  53. I was prescribed this medication at a fairly large dose since I am 29 years old and 220 lbs. this medication did absolutely nothing for me, I took 100mg of vyvanse per day and it has since worked very well while combined with my other medications. I am also on 2000mg of depekote for bi polar and since ive combine these two meds ive felt like a new person. I have had a lot of issues in life adhd was the least of my worries I was a heroin addict and bi polar so finding the right meds was a very serious issue. however im doing very good now and am very happy with my meds

    1. Hi Chris,

      I’m glad to hear you found a workable Rx combination for you. That is no easy feat when you have bipolar and ADHD, not to mention substance-use issues. But of course ADHD and bipolar can create a vulnerability to developing substance-abuse problems.

      Kudos to your doc.

      g

  54. Kerry Lockart

    Hello Everyone. First I just want to say thank you, blogs such as this are so inspiring.
    My 9 year old daughter was diagnosed with ADHD by the age of 5. Mostly related to her self esteem and constant need for redirection. She has had some of the most remarkable MD’s helping us navigate her to happiness and success. We have tried a wide variety of medications, I often feel as she grows and develops, a drug that worked well for a period of time, starts to fall short. She was on The Daytrana patch for over a year and most recently Intuniv for about a year. 3mg for the first 9 months then she started to struggle at school so we increased her to 4mg. She developed abdominal pain and diarrhea for the past 8 weeks. So significant that we did blood work, stool cultures and had a GI consult. We changed meds as a last ditch effort and the diarrhea had stopped. Strange! We are on day 5 with Quillivant. So far so good, we did experience the flushed face, profuse sweating, and nausea the first evening but our daughter was at rest when she experienced it. Those symptoms passed relatively quickly. She still feels her hands are a little sweaty. Her appetite has been normal, no abdominal pain. I am thinking her dose will need to be increased, but we are in no rush since school is out we have some wiggle room. Our biggest struggle is her inability to fall asleep. I struggling to remember if this was an issue with any other stimulants. The patch was so easy, basically she was able to sleep 2 hours after we removed it, so we had control. I know she never had any continued difficulty sleeping on stimulants so I hopeful this is just a transitional period. Any one have this initially but it resolved?
    Thanks for your help,
    Kerry

    1. HI Kerry,

      I was watching an old video the other day, a panel of teens talking about their experience with ADHD. Those poor kids…stuck with the old formulations of stimulants. I felt for them, not having the broad range of delivery systems and formulations that people have today. It allows so much better customization.

      Please know, though, that many children (and more adults) will have a co-existing condition.

      The stimulants work mainly to hold the brain chemical dopamine in the spot between two nerve cells, so it is better utilized. By boosting dopamine, the stimulants can also back-suppress another brain chemical, serotonin. Think of it as a teeter-totter that must be kept in balance.

      What you have described as symptoms in your child might actually be symptoms of norepinephrine/serotonin-related issues (e.g;. anxiety, depression, sleep disorders, even the GI issues that you describe, etc.).

      In other words, it is the rare person with ADHD who can take a stimulant alone to good effect.

      Also, the stimulants themselves can exacerbate “serotonin/norepinephrine issues.” This can happen immediately, or it can become more prominent over time.

      Good luck!
      g

      Instead of changing stimulants each time there is a bad effect, please talk to your MD about assessing for adding a medication such as Strattera (which helps a lot of people with ADHD-related sleep issues) and acts as a norepinephrine inhibitor.

  55. My 6 (now 7) year old son started taking this about 7 weeks ago. The first day he felt a little nauseous, but that seems to have passed pretty quickly. We really try to get a good amount of food in him at breakfast when he takes it, to counter any appetite loss and nausea. He isn’t usually that hungry at dinnertime, but he gets hungry later and if we don’t keep him fed, I think he’s more prone to crazy emotional meltdowns as this wears off. I wasn’t sure if the meltdown thing was normal.. He was good sleeper before, and for the most part he still is, though he sometimes takes a little longer to fall asleep, but not much. And we have to watch his weight, he’s a skinny kid already.
    As far as effectiveness, the stuff has worked really well for his behavior and focus at school! He had a daily behavior chart already and since he’s been on the medication, he got smileys across the board every day, and when we ran out of it for a couple of days, his teacher noted an immediate change (for the worse) in behavior. Even he was aware of how it helped him behave better and get more done. And it makes him feel good about himself. He got several “team tickets” (a good acknowledgement) at school in that period of time and he just loves getting that positive reinforcement. He feels so proud and I am happy for him because he feels more in control of himself.

    1. Hi Tara,

      Wow, good for you! I’m happy to hear your little guy is seeing what he can do, with a little help from “eyeglasses for the brain.”

      As time goes on, you might want to talk with his physician about tweaking the dosage and maybe looking at something for any anxiety that he might have (that’s decreasing the appetite). Sometimes, a medication such as Strattera at a low dose can provide 24-7 coverage that eliminates the meltdowns, helps with sleep, and might make possible a lower dose of the stimulant, thus with fewer side effects.

      Thanks for your report on this Rx choice!
      g

  56. I started Quillivant XR a couple weeks ago. I am a 37 yr old male with ADHD, past depression and severe social anxiety. I take 1ML or 5MG. I was previously taking Adderall 2.5-5MG depending on my plans for the day. The Quillivant (Q) has been fantastic. I am prone to have anxiety attacks inwhich I would have to be very carefull woth Adderall. My attention and focus has been really good and no problems falling asleep. No issues with anxiety and can show my true perosnality when I am on it. Unlike adderall which can amplify my anxiety during social situations. I wake up at 7am and tylically fall asleep by 10PM. So it seems like I am on a very small dosage compared to others I have read about, but has been working for me so far. Taste is fine. Wish it were a capsule, but thats ok. I have adderral for travel.

    1. Hi Jt-

      Wow, glad to hear such a small dose works best for you. You must be one of the “slow metabolizers.” And few side effects.

      It’s so wonderful how many choices we have today, in delivery systems of the stimulants. It can make such a difference for any individual.

      Thanks for sharing your experience.

      Best,
      g

  57. My daughter age 7 started on this a couple months ago. We switched from Adderall due to bad stomach aches. I think her concentration was better on the Adderall, but we have increased doseage and that is helping a lot. No bad side effects, and for the most part it seems to control her impulses maybe better than when she was on Adderall. She likes the flavor. Swallowing a pill wasnt a problem, but the dosing syringe makes it easy for on the go in the am when she isnt as awake. Without all the side effects I think she is focusing better at school. I would recomend this medication. My daughter’s grades suffered severly without the proper medications. As you said before, I dont give my daughter medications because I dont want to be a parent, I give it to help her. It was hard as a mother of a kindergardner , now in 2nd grade, struggle to keep up. Not that she wasnt smart but because her attention was all over the place….oh look a squirrel. No joke. Much better improvement overall.

    1. Thanks for sharing your experience, Rachel. I’m happy to hear of this positive outcome, and that your little girl is able to focus her intelligence now.

      tx
      g

  58. My now 6 yr old son started quillivant in the early part of 2014. At the time, we had serious safety issues with darting and lack of fear and or stranger awareness. Once on Quillivant, we noticed a marked improvement in his attention and awareness. He still struggles to catch up to his age group but we no longer worry if he will suddenly run into the middle of street or walk up to strangers and try to leave with them. His speech had been affected by the ADHD and his preterm birth and, academically, he was behind a grade. Now, in order to reduce future stress in school, we had decided to have him repeat first grade and give him time to absorb the information he couldn’t before.
    We have maxed his speech, ot, and pt services and the medication (now a 5ml dose) is allowing his full participation in all aspects of his school and private life. Minor side effects we are still fighting with is bedtime and his more need for attention and sensitivity. He still remains the sweetheart he was always known to be, though.

    1. Hi Lucy,

      I know you were commenting on this Quillivant XR post, but your story resonates with the point I make in another post: that sometimes very young children’s ADHD symptoms pose a risk to their health and welfare. Their parents don’t choose to give medication to these children because they don’t want to bother with them or “be parents” but because they want the best for them.

      Here is the post: https://adhdrollercoaster.org/adhd-news-and-research/adhd-in-toddlers-yes-in-babies-too/

      Continued best of luck,
      g

  59. Hi Jane,

    I’m sorry but I don’t understand your question, “What are the benights of this regimen?”

    Maybe the spellcheck on your device distorted “benefits” to “benights”?

    If his handwriting was deteriorating, that doesn’t sound like a good thing. In fact, with some children, you can tell when the medication is wearing off because their handwriting turns into a scrawl.

    Intuniv is not for every child with ADHD. While the stimulants are a first-line treatment, there are sometimes other conditions that the stimulants do not address. For those (anxiety, insomnia, etc.), there are other options. Intuniv is one that helps some people, but it is an anti-hypertensive and the mechanism of action (how it actually works; what it does) is not quite understood.
    tx
    g

  60. My 5 yo daughter was recently diagnosed with ADHD. She’s been on Quillivant XR for 2 days. It’s been great except for 2 major side effects, diarrhea/belly aches and insomnia. Will these side effects go away with time? Or any tips to ease these side effects?

  61. My son is 8 and diagnosed with ADHD. He started taking Quillivant XR in March. Started him on 2 ml. A month later increased the dosage to 3 ml. At first we had great results in school. The feedback from his teachers is still good. Academically he has improved, although there are here and there days when his results are not that good, but at least it’s not every day. A big concern lately that we have, however, are angry outbursts, anxiety and crying… He is very emotional and ” touchy”. Could that be related to the medication.? We are very concerned. Thank you!

    1. Hi Diana,

      Half of all people with ADHD, including children, have a co-existing condition. Most commonly, it’s depression/anxiety (“serotonin” issues) but also bi-polar disorder, substance abuse disorders, and other.

      There are MANY possible factors that could be causing this reaction in your child, including one of those co-existing conditions, insufficient sleep, a sensitivity to something in the medication. It goes on and on.

      Talk with your doctor, but more importantly keep studying this issue yourself. The sad truth is that most MDs don’t know what they’re doing when it comes to teasing out these issues. Also, they are given little time, considering insurance reimbursement rates.

      Read Dr. Charles Parker’s book Paying Attention to the Meds for Paying Attention. http://www.corepsychblog.com

      Read Dr. Martin Kutscher’s books: http://www.kidsbehavioralneurology.com/adhd_e-book.htm

      Good luck,
      Gina

  62. My son is 6 years old and has been diagnosed with ADD, for the last several months, we have been trying to find the right mediation for him. He started out with Focalin (5mg) with no change at all, increased his dose to 10mg, only change was negative (emotional outburst, temper tantrums, aggression). They put him on Vivance, which he took for 3 weeks and had definite improvement, he was so focused and no behavior issues, however he developed a facial tic that got progressively worse by the end of the day and in the evenings, he would talk excessively and could barely keep his eye open due to the facial tic. I took him off of that and the dr. put him on Intuniv (1mg then 2 mg), which seemed to help for about 3 weeks but then he reverted back to his behavior (no focus, potty mouth,) and had increased anxiety. Now the dr. prescribed Quillivant XR, 1mg. and he has taken it for 3 days and has no focus and is bouncing off the walls. He was not previously hyper but he won’t stop running around, has aggression, saying potty words and is extremely hyper. I have contacted the dr. but has anyone had experience with that? Is it an issue with the dosage or the medicine? I don’t know how long I should stick it out?

    1. Kerri — the truth is that a lot of this prescribing is the equivalent of throwing spaghetti at the wall.

      I encourage you to read up on this subject by visiting Dr. Charles Parker’s blog: http://www.corepsychblog.com

      Also, read his book: http://www.amazon.com/ADHD-Medication-Rules-Charles-Parker-ebook/dp/B005JZ93

      And Dr. Marty Kutcher’s book: http://www.amazon.com/Kids-Syndrome-Aspergers-Tourettes-Bipolar-ebook/dp/B00ICS8MVQ/ref=sr_1_2?s=digital-text&ie=UTF8&qid=1400545111&sr=1-2&keywords=kids+in+the+syndrome

      Reading those two books will make you better informed than 80% of physicians on this topic.

      Truly, read ’em. Learn. It’s up to you to take control of your child’s treatment.

      Good luck!
      g

    2. Keri-
      I know your post was from 4 years ago, but just now seeing it and researching the exact same symptoms with my 6.5yr old. We started on Focalin – and the same thing that happened to your son happened to mine, he was aggressive and very abrasive. We then tried Vyvanse, that seemed to help a lot – but then the facial tics started. He was noticeably blinking constantly.We are currently looking at XR – the liquid dosage of 3 ml. I’m curious to see how everything ended up working out for your son or if you switched medications?
      Thanks!

    3. HI Kirby,

      I’ve sent an e-mail to Kerri. We’ll see. Four years…her e-mail might have changed.

      best,
      g

    4. Hi Kirby,

      I wrote to Kerri, and she replied with this message:

      Absolutely, I don’t mind replying. I can’t find the original link to that thread so feel free to share my comments:

      We kept my son on Vyvanse for over 3 years, he was diagnosed with Tourette’s and had facial tics as well as other vocal and motor tics which continued. We kept him on Vyvanse because that was the only medication that seemed to help him focus but we did put him on another medication called Orap that helped suppress his tics. I believe that there are other alternative medications to help with the tics in addition to Orap as it is a strong medication that is used to lower blood pressure. It has been 4 years since we started him on medication and a lot has changed since then. We have had other diagnosis’ and challenges that we are facing that has brought us to the decision to discontinue all stimulants for the time being. He is no longer taking any stimulant, nor the medication to suppress his tics. He is on other medication to address other issues and may take another ADHD medication in the future but for now, we are off those meds.

      I hope any information that I could provide was helpful!

    5. Hi Kirby,

      As I mentioned to Kerri, please don’t overlook the importance of vitamins and minerals, especially when it comes to tics.

      Sadly, we cannot rely on most prescribing physicians to know even the basics of nutrition. They don’t learn in medical school.

      But brain function is poor and so is medication metabolism when there are vitamin and mineral deficiencies. Especially the B vitamins and magnesium.

      I encourage you to read this post. It lays it out in simple terms:

      https://www.kidspot.com.au/health/disorders/hormones-and-nervous-system/magnesium-helped-cure-my-daughters-nervous-tic/news-story/8b6cb0258369f2493e0bfb18d78f157e

  63. Hello,

    My son just turned 7 years old last month. For the past three weeks, his doctor started him on Intuniv. We had to discontinue using it a bit because it seemed like he was falling back to his old ADHD behaviors after only a few weeks on it (lack of focus, some aggression, answering back and belligerence in school and at home). During the first adjustment weeks on Intuniv, although a bit groggy, he was very calm and loving and did not appear to have any problems at home and school. I was so hopeful, but like I said, it regressed after the 1 ml dosage was raised to 2 ml.

    The doctor immediately recommended we switch my son to Quallivant. I gave him the prescribed dosage of 4 ml this morning. He went to school and appeared to have done very well. He even got a reward for excellent behavior (which is rare these past months). But when we arrived home, my son seemed overly alert to the point where his eyes looked buggy. It alarmed me honestly. He also was talking so fast, and again this was very uncharacteristic for him. He also resumed to speaking very loudly as he had before we even began ADHD medications

    It began to subside when we passed the 12 hour mark, and i was relieved. But right now, it is 1:40 am and after four hours and a half of being wide awake, my concerns are certainly heightened. As my son tossed and turned he did not appear agitated at all or impatient. But he seemed to be thinking of many different things as i laid beside him. I ended up laying down with him because i wanted to help get him to sleep.

    So my questions are:

    – Is this normal for the first day?
    – Is this typical to switch from intuniv to quallivant in a day? Does it produce these results in demeanor and behavior?
    – Could the doctor have started him too high on his first day at 4 ml?

    Although I have called and left a message with the doctor, I had hoped you may have some insight to this. Thank you so much for your help.

    1. Hi Mae,

      I of course cannot give you medical advice. But I can offer an informed perspective, based on the many lectures I’ve attended and books I’ve read — and common sense.

      First, if your boy was doing well on the lower dose of Intuniv, why didn’t the doc just return to that lower dose?

      Second, there are so many other issues here to be explored. That would include the type of evaluation conducted, the quality of your child’s sleep, his diet, exercise, sunlight exposure.

      In other words, it’s important to know that your child, in fact, has ADHD and is not suffering from other problems.

      Also, if all the other factors have been ruled out as contributory, and there is good reason to think he has ADHD, it’s important to know that ADHD has many “traveling companions.” That is, a person with ADHD could also have anxiety, depression, bi-polar, OCD, etc. In that case, the stimulant can aggravate those conditions even as it helps ADHD symptoms.

      It is very important that you get a note book and keep careful notes — the medication, the dosage, the date, the effects on your child, reported behavior, effect on the sleep. It is this kind of data that a careful doctor will need in working with you to find the best treatments for your son.

      In the meantime, if it were my son, I would try 1/2 of the dosage you tried and see how that works. If that’s still too much, try 1/4. And DO be sure to shake the bottle for 10 seconds. That’s in the instructions.

      The biggest mistake some physicians make is assuming that there is an “average starting dose.” There are no averages; there are only individuals. And the safest strategy is starting at a lower dose. You can always go up. But you won’t know how much is too much if you start high.

      Good luck!
      Gina

  64. My son started Quillevant XR yesterday. He is 11 yrs old. Dr. wanted to start on 5 ML but I started with 3 ML because I want to start slowly. The first day was fine but the second day he has felt dizzy and anxious. The one thing that was done differently was that medicine was not shaken (forgot to tell my husband that part.) I’m wondering if that has something to do with it. I’m wondering how long I give this to him to give it a real trial. My first inclination is to stop.
    Thanks for any input.

    1. Hi Jennifer,

      Of course I cannot advise you. But if you want to give your child a “real trial,” you should try it a while longer. Perhaps lower the dosage even further — 1 ML. I’m a firm believer in “starting low, titrating slowly.” I think the body gets a little bit shocked from all the up- and downstream effects, and it’s good to give the body a chance to adjust. Also, some people are very sensitive to even small doses.

      And yes, shaking it might make a difference — especially if that’s what it says on the label.

      Also, you want to be sure that you’re not transferring your own anxieties to the child. Children are pretty perceptive that way.

      Also, what is the nature of his anxiety? Sometimes children and adults need some coaching to get accustomed to the changes medication can bring. Cognition changes. That’s the point of the medication. But they need help and education in understanding the changes. And they need help in articulating them.

      But if your child continues to get anxious — and the ADHD diagnosis was thoughtfully made — that could indicate that he has co-existing anxiety. Half of people with ADHD have a co-existing condition.

      Good luck,
      Gina

  65. I know that there is a correlation between the gut and the brain. My son is actually on a probiotic and also on a product called Similas GFCF; it is a gluten and Casein digestive enzyme. I have seen much improvement on these supplements. He makes eye contact now, he has conversations now. Six months ago before we started these, he did none of those things. I also watch for food dyes and I’m very careful with his diet. I have an integrative natural medicine pharmacist that I see personally, and he talked to me about a cycle in the brain that children with autism do not have. It is related to the absorption of glutathione in homocysteine metabolism cycle. He said that without the cycle the brain cannot metabolize certain metals as well as B6 and B12 conversion,and as things built up in the brain that it can’t get rid of. And also that it causes free radical damage. I actually have done more research on autism than I have on ADHD. Many of my sons Aspergers symptoms overlap this ADHD diagnosis. I’m not really sure how to separate the two at this point in my sons life. I do know that he has friends for the first time in his life this year. I care about his emotional health, mental health and spiritual health. He is such a good boy and gets such a bad rap.

    1. Hi Nancy,

      It sounds like you’re seeing improvement then. Perhaps the issues are more AS than ADHD.

      I’ve heard that a low dose of Strattera can be helpful for some people with AS; it helps with the mood issues.

      Perhaps the stimulant dosages were too high? It might be that he responds to a very low dose, and more than that backfires.

      I’d still be curious about why the Concerta made him sleepy. That might mean he’s rather sleep-deprived; the Concerta might have just let him relax enough to feel sleep.

      Best of luck,
      Gina

  66. My 10-year-old son has a diagnosis of Asperger’s and ADHD with impulse control problems. Two years ago we started on various stimulants to help his ADHD. We tried Focalin EXR first and it worked for a while then we increased it and my son had racing heart issues. Then the doctor changed him to Concerta. That medicine made him fall asleep in school. The next medicine we tried was Vyvanse. On by Vyvanse my son was so tired and so cranky that we took him off of that after about eight months. Two weeks ago we started him on Strattera. It was like my son was alive. He was happy, funny and seemed to be able to focus. The downside was that he had no impulse control. In the two weeks we had him on Strattera he was in the principals office three times. He had never been to the principals office before. Yesterday my son came home after going to the principals office and was crying saying, “I just want to go back on the old medicine. I would rather be tired then get in trouble.” I spoke with the doctor and he wanted him to start on Quillivant XR today. Today is Friday. I do not want to start him on a medication and not be able to monitor him. I kept him out of school today because he was crying and afraid that he would get in trouble today on Strattera. I will start him tomorrow on this new medication. In the meantime my concerns are his sleepiness his crankiness on the stimulants. I loved that Strattera gave him his life back and his joy back. I do not however like that he was getting into trouble, of course. I recently read an article about children being hooked up to a type of tens unit that stimulates the brain while sleeping. It is being used in Europe but is not approved for the United States. I read that folks are seeing dramatic results in their child’s ability to focus on this. This device was initially used to help people decrease seizures and depression. But they accidentally noticed it helped with attention. Unfortunately I cannot remember the name of this product. I know that if that device were available we would try it. I hate trying multiple medications on my small child to help him. I know it’s the only option to help him at this time. My prayer is that something will come along that is not a medication but will stimulate the brain in a different way that doesn’t have long first term ill effects, but kick starts the brain to work efficiently.

    1. Hi Nancy,

      I’m sad to read of your boy’s plight, not wanting to school for fear of getting in trouble. Poor little guy!

      This kind of story always comes to mind when I heard the uninformed public dismiss ADHD as “parents wanting to take the easy way out.”

      Here’s the thing, though: You simply cannot rely on the average MD to competently treat ADHD. You must be pro-active in researching, reading, and observing. Also in monitoring your son’s diet, trying to notice if some foods create “side effects” for him. Eliminating wheat, corn, and dairy will provide good “experiments,” too. While ADHD is not caused by food sensitivities, many kids with ADHD have them, and these problems can exacerbate symptoms.

      How much sleep is he getting? And is it quality sleep?

      The Focalin shouldn’t have “worked for a while” unless something else was missed. (Has he been checked for vitamin/mineral deficiency?). Was he started at the lowest dose and gradually worked up? Are there other conditions (anxiety, etc.) that complicate treatment? At least half of children and adults with ADHD have a co-existing condition. I would not be ready to accept the Asperger’s diagnosis until his ADHD is properly addressed; many times, the difficulty with reading and responding to social cues is the reason people with ADHD get diagnosed with Asperger’s.

      Are other strategies in place to help him get and stay organized? Is he getting exercise?

      I would focus on all these things before experimenting with an unproven electric gizmo.

      Try reading Dr. Charles Parker’s book, http://www.amazon.com/New-ADHD-Medication-Rules-Attention/dp/B00DIKYPHS/ref=sr_1_sc_1?s=books&ie=UTF8&qid=1398444624&sr=1-1-spell&keywords=paying+attention+to+the+meds+for+paying+attetion

      Good luck!

  67. Miss Steph, our pediatric neurologist suggested opening up the capsule of Vyvanse and putting it into a cup. Mix one tablespoon of water for every 10 mg.’s. I keep it in the fridge. Then if you only want 20 mg.’s you take two tablespoons out. Mix it with some non citric acid drink. I mix ours with just a little bit of chocolate popsicle. My dd likes taking it now. It’s an alternative to taking a capsule anyways.

  68. Yes I did educate myself and my sons physician did go over everything as well. This was not some bandwagon I jumped on and started shoving drugs down my child’s throat.
    I was venting on a forum where I thought others would be a little more understanding of my confusion and lost feeling. Thanks for letting me know this is not the correct place.

    1. Cathy – you are misinterpreting my advice.

      You gave me very little information to go on, and I did my best in directing you to sources of education.

      g

  69. My son is 7 and has recently started taking this. I have noticed zero change. Is it possible his diagnoses is wrong? Or is this just not the drug for him? Should we give it more time? I really don’t know what the right thing to do for him is.

    1. Hi Cathy,

      Have you educated yourself about ADHD symptoms and medications? Has the prescribing physician talked with you about how he/she diagnosed your son and why this medication was chosen?

      Parents must be pro-active. You cannot just turn your child over to a physician whose competency might be unproven.

      Please read up on these issues with a good book or two. Also at the National Resource Center for ADHD. You can also call to talk to someone at their 800 number. http://www.help4ADHD.org

      Best,
      Gina

  70. My six year old son was diagnosed with ADHD and has a form of PTSD from witnessing a stabbing that occoured in his fathers home during a court ordered visit (which is when his agression started). He is so smart just has a really hard time focusing and getting his work done. He gets angry really fast also which there is alot of anger he has towards his father. I do everything for him and his sister plus work fulltime. I have had alot of trips to the school for his bad behavior, alot of meetings, have had to go pick him up from school and everything. His psycholgist and psychiatrist put him on Quillivant XR which I started him on it this morning. I went to the school to visit him and he was playing at recess like normal nothing out of the ordinary.. His teacher said he has not complained of anything negetive and he told me I am feeling fine. I know it will take a couple days to see a difference which I am praying that it helps him because I am physically and emotionall exhausted I have barely eaten in two weeks. There were alot of steps we had to do before they could put him on medication such as getting the ok from a cardiologist and he had to have a ct scan done before. He was born with a heart murmur but he was given the ok the cardiologist said it is a quiet murmur and there are no issues which I am thankful for because I was really worried about that. I hope this works because I cannot handle anymore stress. I had ADD as a child so I know what he is going thru and I still have it however I do not take anything for it, for myself I try indian remedies to help me. I also have really bad anxiety so some days it is really difficult for me. His step father has helped me out so much as his oldest child from his previous marriage has ADHD also. My sons real father I have tried getting him involved and he has not gone down to the school or even called the school to check on his sons progress in school, he has failed to show up to doctor appointments that I have asked him to go to so he can be involved in his treatment but has also failed to show up. We are having a meeting at the school this friday which is his IEP meeting and the principle called the father asking him to go and when she called him he acted like a concerned father which is so fake because even my sons teacher told the principle that if he was so concerned about his sons behavior in school he would have been in contact with the teacher and the mother and go to meetings and doctor appointments. It is now almost the end of the school year and he has not once tried being involved, he only sees our son on court ordered visits two weekends a month and that is it. The father was mad that he was put on ADHD medication BUT it is medically necessary and it would be his word against medical documentation from the doctors so he has no chance or arguing about anything. I just pray this works!!

    1. Sarah — Congrats for persevering in getting help for your son. It sounds like it’s taken a lot of determination, especially with your son’s father.

      I would encourage you to look into treatment for your own ADHD and anxiety. These conditions can make parenting so much harder. It sounds like you are at your limit with stress, and treating your own ADHD could greatly diminish your stress.

      Research has shown that parents with ADHD have a harder time parenting effectively, and so treating parental ADHD is of critical importance.

      Best,
      g

  71. Hello
    I have been reading through the comments and they are very helpful. My son has severe adhd and has been on Several medications. He just got prescribed this medication. Only problem none of the pharmacy Carty it where can I find it

    Thanks Annemarie

  72. I started my 5 1/2 year old son on Quillivant today at 4ml. We tried it on a Saturday first so we could see how it would react with him. He went to play at an indoor playground for a little while and his face became VERY flushed and started sweating profusely, his heart had to have been racing for him to get that red and sweaty, we had him sit down and rest for about 15 minutes until it settled down then let him play a little more, we were there for a total of 70 minutes including a 15 minute break in the middle, he wasn’t even running around very much, but he looked so red in the face, was sweating SO much, it seemed so disproportionate to is level of activity. He also looked sick. He said he didn’t feel like he was going to vomit, but he looked like it. As we were leaving he started acting very drowsy, and looked pale. All within a short period of time. Then I was reading that the manufacturer booklet states it is unknown if the medication is safe and/or effective for children under six. Though his impulsivity and focus was improved, I’m not sure this is safe. His reaction concerns me greatly.

    1. Hi Denise,

      According to the prescribing information, that seems to be a low dosage. Did you ask the physician about this?

      Personally, my attitude toward starting a new prescription for a child (or myself) would be to take it very easy on the first day, at least. That would mean staying in a controlled environment, with no extra variables, including exertion.

      Starting a new medication, especially one affecting the brain, can create a whole host of reactions. You just don’t know until you try it. So you want to be cautious. And you also want to be sure of the diagnosis.

      Stimulant medications affect far more than focus. They take effect in the brain: the body’s headquarters. So they can affect all physical systems. Especially when it’s first taking effect, these medications can be a bit of a shock to the system. That’s why it’s best to go slow and watch for any changes. Sometimes side effects resolve after a time. Sometimes they don’t, and discontinuing the medication is a good idea.

      I’m not sure why you stayed the entire 70 minutes when your child looked ill. It seems that discontinuing the activity would have been the wiser course. Perhaps his condition wasn’t as remarkable as described here. But obviously it’s given you concern.

      best,
      g

  73. Dr Bruce D Kimble, PharmD

    Your pharmacy should e able to change the taste of this medication to one the patient likes. Not all medications can be changed in taste, talk to your pharmacist. The chemicals to make the change are made by flavoring companies, so they are better (usually) tasting than the one made by the pharmaceutical companies.

    1. Hi Margaret,

      I don’t think so. But, after all the troubles with other generics for ADHD medications, I would not want to try it.

      best,
      Gina

  74. Our pediatrician just switched our 51/2yr old groom clonodine to quillivant xr…..we self pay on scripts and at over 200$ it was to expensive so he gave us a card but it won’t work because she is not 6 yet?? Anyone know why? Is it not safe under 6??

    1. Hi Danielle,

      The best person to ask if Quillivant is safe for children under six is…your doctor. And the company. Check the website and call customer service if you’d like to know specifically why the card wouldn’t work for you.

      But it might be that the medication is officially approved for children six and older. In such cases, physicians can still prescribe the medication “off-label” but it might not comform with the manufacturer’s guidelines.

  75. My 9 yo tried Quillivant almost a month ago. He only tried it one day because it seems to have greatly intensified his anger/aggression (just like intuniv, daytrana, adderall at therapeutic doses) AND created/exacerbated a facial tic! When he was 5 1/2 we started trying adhd meds, first the two different types of neurostimulants, and finally Str attera. The Strattera was the only thing that helped, however at 60 mg the aggression seemed to increase again. So for over a year he took that, but my ex didn’t think it did enough and I agreed to try stims again if he would agree to try nothing for at least a month first.

    It’s taken a full year, with vyvanse showing the most benefit but being nearly impossible to get him to take, but after the Quillivant fiasco, he’s finally on 40 mg of Strattera again, which is where I hope to keep him!

    Interestingly, inspite of his pschiatrist’s intention and LOTS of lit about the drug, the psych he had the “emergency visit”

    1. Steph – you might want to talk to your doctor about co-existing conditions. In my experience, it’s a minority of people who do well on the stimulant alone. If there is co-existing depression/anxiety/serotonin-issue, the stimulant can exacerbate that problem and offset any benefit for ADHD symptoms.

      best,
      g

  76. My 7 year old son has been taking 4ml daily for about 4 months. I was very hesitant to put him on medication and blew off being told by others that I should test him for ADHD. I finally read on it and researched it realizing it is a true disorder not just a “child being a child” He was not doing good in school at all and was always in trouble. Since the medication he is now doing wonderful in school with a huge improvement in his school work also in his behavior. He gets to do so much more that he was missing out on due ton his “bad behavior” I am hoping he will not have to permanently take medication. As far as side effects, the first week was a little hard on his stomach and he did not have much of an appetite at all but now he does fine as long as he eats a good breakfast right before taking it. He won’t eat much for lunch but by the evening he is eating like normal if not a little more. He has complained of a little dizziness but the doctor said it is nothing to worry about and it does not seem to affect him much anymore. I have noticed he is more sensitive and emotional so I try to be more patient and calm with him. I hope my post will be helpful.

    1. Definitely helpful, Deb. Thank you!

      Some in the public wrongly assume that parents are rushing to the head of the line to medically “subdue” their kids with ADHD. I’ve never seen that to be the case (though anything’s possible).

      Instead, most parents are like you. Cautious. Concerned. Skeptical that a child should need “brain medication.” I was the same way until I, like you, let my heart and compassion guide me to learn more, to not react solely to emotion but to gather education.

      Your child is lucky to have such a mom! Keep watching those side effects. It might be that medication will need tweaking or other strategies implemented. You are your child’s best advocate, and sometimes the docs don’t know best.

      take care,
      g

  77. I noticed that when I took the intuniv out his system, that the impulsive behaviors came back, even with him having a stimulant of methylphenidate cd in his system. The intuniv worked when I gave it to him in the evening, to subsdue his impulsive behavior for the mornings and afternoon at school. I took it out, trying to figure out if it was disrupting his aftercare, but it turns out the stimulant wasn’t lasting through the after care part of his day. I will start the non stimulant back on the evenings. When we changed it to giving him the non stimulant at 1:30 at school, it didn’t work. Giving him the intuniv at 5pm worked for the next day of school. So changing him from methylphenidate cd isnt going to be changing, just changing to the quillivant xr would be longer lasting than the metadate cd.

    1. Hi Rosa,

      Well, it sounds like you’re doing a great job of observing your son’s behaviors and how the medications work.

      I’d also encourage you to look into magnesium supplementation for your son.

      best,
      g

  78. My son is 4 and will start Quillivant xr as soon as his insurance approves it. For the impulsivity I’m wondering if I should continue with the intuniv…but does the Quillivant xr assist with that to where I won’t need the non stimulant at night for my son?

    1. Rosa,

      Quillivant is a stimulant, and that’s generally considered the first-line treatment for ADHD. It generally helps with the core symptoms of hyperactivity, impulsivity, and distractibility.

      Intuniv is not a first-line treatment for ADHD, but it can help with some of the auxiliary symptoms. Some people find it helps with the irritability and aggression.

      Nighttime is an entirely different issue. There are many reasons why people with ADHD might have trouble sleeping. Here is a blog post I wrote about ADHD and adults; many issues are the same for children with ADHD:

      http://adultadhdrelationships.blogspot.com/2009/07/to-sleep-perchance-to-turn-off-that.html

      Good luck,
      g

  79. Hello….just started my 7year old daughter on 5ml today and wondering how equivalent 5ml of quillivant is to the 30mg of adderall she was taking…she has only taken it today and has been flying off the walls….very very hyper wondering how long til you can tell of its working…thanks in advance

    1. Hi Christie,

      It’s really impossible to make equivalencies between two very different medications. You have to keep increasing slowly to see if that helps mitigate symptoms without increasing side effects.

      It might be that MPH (methylphenidate) class medications won’t work at all for your child.

      I write more about the basics of medication choices and titration in my book. While the information is primarily geared for adults, it applies to all ages.

      http://www.amazon.com/gp/product/0981548709/ref=s9_sims_gw_s1_p14_i1?pf_rd_m=ATVPDKIKX0DER&pf_rd_s=center-2&pf_rd_r=0Y9XTBJ1CB14HVJ3H570&pf_rd_t=101&pf_rd_p=470938631&pf_rd_i=507846

      Good luck,
      Ginas

  80. My 7 year old just started Qullivant XR (4 ml), 4 days in. We have noticed his ADHD symptoms, as well as his anxiety level, are much improved already. He had one night that it was difficult for him to get to sleep (we all have those nights) and I see no effect on his appetite yet. My family has a history of ADHD, mood disorders, addiction and chronic depression. One of his uncles suffers from psychosis as an adult, he was on Ritalin most of his childhood. The fears I have are the long term effects of any of these drugs for ADHD. Although the doctor said the new medicines were much better and didn’t have the bad side effects, I still fear long term issues that may develop. What is your opinion of these types of drugs contributing to long term mental illnesses? There is no long term studies of Quillivant, and like Ritalin when it was a new drug, the future effects is unknown.

    1. Hi Victoria,

      I appreciate your concern. I would feel the same way about my child.

      When I first started studying the research about ADHD, I was very skeptical. Giving medication to a child who wasn’t “sick”? That’s crazy!

      Then, I came around. After talking with hundreds of parents and reading tons of scientific papers, not to mention talking with many top ADHD experts who have as their top priority the health and welfare of these kids (and adults).

      It always depends on the child, but I can tell you the risks of UNTREATED ADHD are established and well-known. And Ritalin (methylphenidate, which is the same RX in Quillivant) is one of the most studied medications in history! At least a half century of research, and growing all the time.

      In my opinion, the biggest risk with these medications is giving them to someone who doesn’t actually have ADHD but instead has some other problem, such as thyroid or food allergies, or even another psychiatric condition. So, it’s very important to get a clear diagnosis and to rule out other factors.

      But if your child is doing better on this medication, it means that the diagnosis is correct. It is simply not true that most people do better on stimulants, though that is popular propaganda and even some doctors hold this misunderstanding.

      Remember that there are big costs to untreated ADHD, and big risks. Not just with school work but with many other issues.

      best,
      g

    1. Lisa, your child might have other issues, such as bi-polar. Anything’s possible.
      The point is not to be scared of your child but to get help for him. Talk to the MD ASAP about this reaction to the Rx.

  81. I live in a 14 room house huge rooms, 2 laundry rooms…and my house is imaculant, its just my brain is not… but you gave me great advise, because my house was chaos for the last year until, I started Medication…. My older son says he might have ADHD, but the military assumes everything is ptsd. but when he was younger he never had problems… Straight A student that I never had to help he never brought homework home… Unless it was a big project…I never ever even helped him study for a test…. and I was a single mother back then he is 27yrs. old….has a house in california, a beautiful one… and one here in midwest… great with finaces… and never seen a cleaner house, It don’t look like a guys house….He has never drank alchohol or done drugs…. and he will not come around if I drink a beer… he hates it. but, he was injured bad, been in surgery’s for the last 3 years….my 9yr old seems to be fine…. do you think that my 6yr. is acting on my out on my problems….his phyc. was very thurough. She spent 3hours with him… although she is a little worried that he has OCD issues….now that you know a little more, what do you think…. I am very thankful to hear your opinion.. you don’t know how much I appreciate it. Thank You again…. Lisa

    1. Hi Lisa,

      Congrats on the immaculate house. Wish I could achieve that! But that’s no proof that your ADHD isn’t affecting you. It might be that you channel anxiety into cleaning the house.

      The military can have a real blind spot when it comes to ADHD. It also varies by branch and even by base, as to how enlightened the medical and psychological professionals will be on this issue.

      And, again, his abilities to get straight As doesn’t mean he didn’t have ADHD. It might mean that he was just extra smart or also worked very hard. But the rest of what you say (clean house, no substance abuse, good with money) would indicate that ADHD might not be an issue. Still, it could be that the stress and the injury pushed dormant ADHD into the fore. I wish him all the best.

      As far as the OCD issues, when ADHD and depression/anxiety/OCD co-exist, the stimulants can exacerbate the depression/anxiety/OCD. That’s why sometimes a stimulant and a serotonin-targeting Rx are used: to address both syndromes.

      good luck, Lisa,
      g

  82. Beverly MacArthur

    My son is 8 and had been previously taking 25 mg of adderall daily. He also has tourettes syndromes which was aggravated by the adderall. We made the switch to Quillivant 6 ml daily and it has simply been the best decision we have made for him. He is doing better in school and at home. It has definitely helped or home and social life! I’m also ADHD, unmedicated because I’m nursing my 6 month old, so dealing with his and mine was quite the daily task. I love this medication for him, and the little to no side effects it produces. And actually, the only side effect I have noticed is that he is more sensitive than usual and cries easily, but I can handle that!

    1. Hi Beverly,

      I’m happy to hear this. Good for you, for making the switch.

      The amphetamines (Adderall, Dexedrine) and methylphenidates (Ritalin, Focalin) are very different stimulants. Two entirely different classes. So if one does not work well, it’s worth trying the other.

      That sounds tough, going without your Rx during pregnancy. Some physicians’s additude is that there should not be a blanket “no stimulant” rule for pregnant women. It depends on your ability to function. I had contact with a woman recently who found relief from her severe morning sickness, inadvertently, from taking her stimulant. She’d been trying to avoid it, but they were moving and she already has two children, so she needed some cognitive help.

      best,
      g

  83. My child is 6yr. and was diagnosed with ADHD on sept.6th, 2013. In about march of last year he started becoming anry. I first was diagnosed with ADD in August 2013. I had lots of problems in school as a child and teenager. when I was 30 got my Bach. in education 3.75. then continued my masters while finishing my last class my older son was injured in Afghanastan 2010. I stopped my schooling due to traveling because of this issue. He is now home with a medical retirement from the marin’s. He is 27 and never had any issues until now. I think I have secondary PTSD, and this may have triggered my ADD issue. My Masters was 4.0 in special education, Now I can’t cope. My youngest started the Quillavant XR On the 7th, in which his behavior was outragious. he is 72 pounds and on 4ML. He returns to the doctor on the 27th of this month. I have been taking observation notes on the hour unless he is in school. he is good in school and is focusing much better, but he has always been good in school. But the teacher takes extra time with him because lack of focus not ability. he makes A’s. since the medication at my sweet boy that turned anry over the summer is now a MONSTER……He has 4hour tantrums like a three yr. old. It has to be the medication… I have never seen these outburst before, jumps up and down throws his head back while crying and screaming the same thing continously…. Im loosing my mind when he does this…. I stay calm try to talk to him… it does not work, I have even resorted in spanking him…. does not matter when he is doing this… he does not stop no matter what…. please help, I see his doc. thursday with a journal for her…

    1. Lisa,

      If the medication is not the right one for a person, of course it can have adverse side effects.

      It’s not the medication per se, it’s probably an inaccurate or incomplete diagnosis.

      I urge you to place a high priority on treating your own ADHD. Your child’s anger might indeed be related to whatever is going on in the home (erratic schedules, lack of clean laundry, regular meals, etc.). Parents with untreated ADHD are not always aware of their contributions to a child’s “bad behavior.”

      As for your oldest son, it might be that his ADHD flew under the radar his entire life until this injury way-laid him. This happens so often with soldiers who have untreated ADHD. I would encourage a full evaluation for him, too, focusing less on the PTSD than what might be the underlying ADHD. It might be difficult to deal with the PTSD until the ADHD is addressed.

      take care,
      g

    2. My son took one that made him very very mean. I cannot remember the name. They were tiny and brown and 17 mg.

  84. leslie stephenson

    just started my 6 1/2 year old son on quillivant xr today. first medication we have ever tried. 2ml is his dose right now – he is a solid 63 pounds of muscle and no fat. i feel like the dose will have to be increased after reading other peoples reviews. we will see. i am NOT going to try the “holidays” from the meds……I want this to be his “normal”. his issues do carry over into home life as well, especially between the 2 of us. he is my only child and i am praying that this makes a difference at school and at home. i am also very diligently working on my own behaviors with him as well……sometimes i think i need to medicate myself in order to bring my frustration level down when interacting with him. i will post again when i start to see the benefits (hopefully). just staying home and watching him over the weekend to make sure he does not have any serious adverse reactions. I am a nursing student so i am a little overly concerned about medicating him from what i know about these drugs – hoping that it is unwarranted.

    1. Hi Leslie,

      If you are the “genetic donor” to your child’s ADHD, then definitely, it is a good idea to treat your own ADHD.

      Some parents who themselves have ADHD experience a higher-than-average degree of irritability and low frustration tolerance. This is a bad mix when dealing with a child’s ADHD (or parenting, in general).

      g

  85. My son just started taking this yesterday. He said he was VERY hungry the 1st day. He is 7…soon to be 8, he takes 4ml a day. His pediatrician said he would only have to take the medicine when he goes to school so I won’t have to give it to him on the weekends unless I just wanted to see what the teachers see… is this the case? I have read that the longer they take meds the more effective they are…

    1. Hi Cristy,

      Of course it depends on the child. If your son’s only issues are being able to stay engaged in the classroom…if he has no problems at home, such as with getting along with other family members or doing his chores, etc. Then that’s your call.

      But really, physicians do people with ADHD a great injustice by advising this “weekend holiday” as general advice. ADHD is 24-7, and can affect development (the internalizing of developmental milestones and new information).

      The experts I respect most take careful inventory of a patient’s challenges before saying that a “holiday” is okay.
      best,
      g

  86. Roberta Capodicasa

    My son has been taken it over the course of several months. He is doing really well on the medication. He does not like the taste however—but this has really improved his ability at school and his self-esteem.

    1. Congratulations, Roberta! Nothing improves self-esteem like the ability to do better and experience success.

      g

    2. My son has tried this liquid for his ADHD. It did not work at all. He is severe adhd and the older he gets the tougher it is to find something that is non narcotic that works good for him. He absolutely HATES the adderal, but it’s the only one that works. So far.

    3. Hi Dawn,

      Much depends on our individual genes. For some people with ADHD, one class of medication will work much better than others.

      The two classes are

      1. Methylphenidate (MPH) — Ritalin, Concerta, Daytrana, Focalin, Quillivant, etc.
      2. Amphetamine (AMP) — Adderall, Vyvanse, Dexedrine

      I hope you can work with a physician who will help find something that is more to your son’s liking. If one has to take medication, it’s best not to hate it. 🙂

      I also encourage you and him to really re-evaluate his diet and nutritional status. To make sure he has healthy protein in the morning, with a little fat and some fruit. That will help get his brain function off to a good start.

      To avoid the junk foods and sodas. And to get regular, sufficient sleep.

      Without these health habits, medication can only do so much.

      Good luck,
      g

  87. My teenage daughter has been taking Quivillant for three months. It has been a wonderful alternative as she does not take pills easily. She has had no side effects or ill-effects and prefers it to the Concerta she took previously.

    1. Glad to hear it, Ayshford. Having all these modern choices is a wonderful thing. It was so difficult in the past to meet different sub-populations needs.

      g

  88. I have been taken quillivant xr about 4 weeks now my dose is 40 mg and I am 39 year’s old. it seems okay yet I haven’t tried a lot of other meds for add. adderall makes me feel anxious like crawling out of my skin.. and I am bipolar as well. the big thing for me is heart burn.. wow bad.
    and @ times I think I might be depressed not sure if it’s this med I’m keeping a log anyone else with depression from this med?

    1. Carrie — Dopamine and Serotonin (to put it simply) have a delicate balancing act. Too much of one or the other and you can exacerbate ADHD symptoms or depression/anxiety. The majority of adults with ADHD have co-existing depression, and taking a stimulant alone can exacerbate depression/anxiety.

      g

  89. Has anyone noticed since it lasts 12 hours that it makes falling asleep a problem? Just curious before I consider switching meds.

    1. Kathleen,

      Sleep is a complex issue with ADHD. It could be that having a little stimulant in the system could actually help you to fall asleep.

      Gina

  90. My son who is non-verbal (Phelan-McDermid Syndrome) just started this medication. He used to be on pills, but has become increasingly difficult to get him to take pill even when crushed up and dissolved in juice.

    So far, I have seen no obvious side effects. Unfortunately he cannot tell me if he is uncomfortable, but if you watch his behaviors, you can pretty much tell when he is uncomfortable.

    I will try to get back to provide progress updates.

    If anyone has seen any bad effects hopefully I will see the posts and know what to look for.

  91. iv been on quillivant for 3 months (45-50mg) a day or so, and tasts like bananahs, but the side effects are really bad everything from seeing thing to ,realizing your not even breathing anymore or your holding ur breathe, never hungery , havnt aten in two days nd i feel as if i could go thee rest of my life with out eating easily ,but of course you have to eat to live ,

    1. Michel,
      Please talk to your doctor. This might not the right medication for you, or might be the wrong dosage.

    1. Hi Elaine,
      Apparently, it uses banana flavor.

      Ironically, taking the medication might help your grandson better tolerate flavors and textures.

      g

    2. It to me had a sweet faint bananna flavor. It didn’t say it was flavored, but I tested a tiny drop to make sure my picky son would take it. It’s a fortune if you don’t have coupons. 150ml bottle was 200, but with drug copay card it was knocked down to 20. We don’t have rx coverage, so the copay card is a miracle from God.

    3. My son was just prescribed this medication. We think it tastes like a mixture between cotton candy and bubble gum. Not bad.

    4. Hey Elaine. My son started taking quillivant 9mg. Does fine. But doctor added a stimulant to it which is 3 mg of intuniv at 5 :00 in the afternoon. But my son is very whiny and irritable when I give him the intuniv. But fine with quillivant. Should i be concerned about this?l

    5. Hi Karen,

      I’m not Elaine, but I’ll butt in. 😉

      Quillivant IS a stimulant. Intuniv is NOT a stimulant.

      If your son gets “whiny and irritable” with the Intuniv, I’d stop giving it to him. Tell the doctor.

      g

  92. Betsy Davenport, PhD

    There are many, many children who can’t swallow pills or capsules. That is what ruled our days for years. She wanted to take the medicine, it was obvious to her it helped, she was religious about it, but how?? I can’t begin to tell you the methods, rituals, sneak-ups, distractors we had to develop. I’d like to just forget about it all, really.

  93. Betsy Davenport, PhD

    This could have changed our family life completely. I do not know why we can put a man on the moon but it took drug companies into the 21st century to develop delivery systems for life saving medications.

    Never mind; it is good to hear that the rising generation of children with ADHD will have another medication available in case its specific properties are needed.

    1. That’s true, Betsy. I was watching one of Chris Dendy’s videos of a Teen ADHD Panel. It can’t have been made that long ago — maybe the early 1990s?

      Yet, I was cringing as I heard the kids describe the meds they were taking — Dexedrine, Adderall, Ritalin, all in IR. They were still receiving benefit, for the most part, but knowing what we know how about the “rollercoaster” deliveries of those Rx…..eek.

    2. I am 46yrs old and have been taking Adderall with great success. My Dr. recently changed mr to Quillavant XR syrup 6ml once/day. This medicine has done absolutely nothing for me…except make me feel sluggish and my stomach upset…I feel like I am starting all over again…this sux. 🙁

    3. Curtis, if the Adderall worked so well for you, why did the MD change it?

      Are you sure the Adderall was working well, or did you have irritability?

      If it did work for you, go back to it. Simple! Or, try Vyvanse. You might be one of those people for whom that AMP class (Adderall, Vyvanse, etc.) of medication works better than MPH (Ritalin, Quillavant, Concerta, etc.)

    4. My son just started this 3 days ago and he is extremely nauseous.. he was previously on adderall but it began to cause severe TICS..just wish the side affects did not affect my son..

    5. Hi Jessica,

      Maybe you want to ask your son’s doctor about a stimulant alternative, such as Intuniv. It might be less prone to exacerbate the tics.

      Also, I would make sure that he’s getting sufficient B vitamins and minerals.

      Good luck,
      g

    6. Quillivant did not work for my daughter. It made have have horrible mood swings, depression, nausea, headaches, etc. We took her off it after 6 days. We couldn’t stand seeing our daughter going through this. Not for us.

    7. HI Dave,

      That’s too bad. It’s a helpful choice for many people with ADHD, including some adults I know.

      If she reacted that badly to it, that is still data. Data that can help inform the doc on deciding upon the next step.

      For example, did she do well on other forms of stimulant? Have other co-existing conditions been identified (e.g. depression, anxiety, bi-polar)? Is it possible she has a severe sensitivity to food flavors? I think a banana flavor is used with Quillivant.

      In other words, the issue here is probably not with the medication, but with other factors affecting your child’s condition.

      Good luck.
      g

    8. hi im new my 5 year old son what just diagnosed with adhd the doctor gave me Ritalin im so scared to start him on it doc said to give him only 1 day for school has anyone had any side affect from pill they gave him 5mg dose

    9. Hi Anna,

      I understand your fears. I would feel the same way if I hadn’t been working in this field for 20 years and talked to many children (and adults, of course) who have ADHD and take medication for it.

      Do you trust your physician and the process used to evaluate your child for ADHD?

      Are you sure there is no other issue that could explain what are seen as ADHD symptoms (for example, poor or insufficient sleep, poor diet, etc.)?

      Are there other conditions in your family, such as bipolar disorder or schizophrenia, that might have been genetically transmitted to your son?

      Generally speaking, 5 mg is a fairly low dose to start. If you are worried, it is possible to break even that in half and try that first?

      g

Leave a Comment

Your email address will not be published. Required fields are marked *

This site uses Akismet to reduce spam. Learn how your comment data is processed.

Stay in Touch!
Ride the ADHD Roller Coaster
Without Getting Whiplash!
Receive Gina Pera's award-winning blog posts and news of webinars and workshops.
P.S. Your time and privacy—Respected.
No e-mail bombardment—Promised.
No Thanks!
close-link