Liquid and Chew “Ritalin”: Quillivant XR & Quillichew XR

quillivant XR and Quillichew XR as new forms of Ritalin

With the introduction of a  liquid and a chew, people with ADHD gained yet another novel way to benefit from stimulant medication. That’s increasingly important these days, as the Concerta authorized-generic (most recently distributed by Patriot) is discontinued and brand Concerta not widely covered. I link to my story about that at the end of this post.

Since I first wrote about these new options, in 2013 and 2015, corporate juggling has made supply erratic. As a result, many people are unfamiliar with Quillivant XR and Quillichew XR. Now in 2022, the supply seems relatively stable. For now!

Today’s dizzying array of stimulant choices can feel overwhelming. But it also means more people have a better chance of finding a stimulant that works best for their unique neurochemistry and preferences.

But First, What About Older Methylphenidate Options?

We might also revisit some old options. Here’s a 2004 paper comparing Metadate to Concerta. I can’t vouch for the real-world application. I don’t know anyone taking Metadate, an older methylphenidate formulation. But head-to-head comparisons of medications are rare, co-authors include several well-known ADHD researchers, so it’s worth checking out:

Efficacy of two once-daily methylphenidate formulations compared across dose levels at different times of the day: preliminary indications from a secondary analysis of the COMACS study data

Who Might Benefit From Quillivant XR or Quillichew XR?

I find at least four reasons why one of these stimulants might be a welcome option:

  1. Difficulty swallowing: Many people with ADHD (and not just children)  have a “gag reflex.” It makes swallowing pills difficult. Hence, a liquid or chew comes as a useful alternative.
  2. Fear of losing control: When a person is especially fearful of taking a stimulant for the first time, feeling more in control can be helpful.  With Quillivant XR, you control the dose precisely (see illustration below).
  3. Ultra-slow drug metabolism: Some people find they metabolize stimulant medications very slowly. That means even the lowest dose of a pill can be too much.  Again, the dropper allows more customized dosing, with the prescriber’s guidance.
  4. More precise dosing: Sometimes a person’s “sweet spot” lies somewhere between the available dosage strengths of the pills or capsules. A liquid might allow more precise dosing. (This is not a claim made by the company. Talk with your prescriber.)
  5. Easier titration: The basic rule of thumb when beginning to take a stimulant medication is, “Start low, Titrate slow.”  That is, increase slowly until maximum benefit is attained.  This is not always easily accomplished with other medication choices. The risk is starting too high and, with a negative response, deciding that medication isn’t for you.  Obviously, the liquid is easily titrated. Yet, the chew is also scored, so that you can split it (see illustration below).

Both Quillivant products are FDA-approved for children, adolescents, and adults. For more on this topic:

Quillivant XR applicator

 

Quillichew Xr dosing

Delivery System Makes All the Difference

These two medications fall into the methylphenidate (MPH) class of stimulants.  Also in this class: Ritalin, Concerta, Daytrana Aptensio XR, Metadate CD, Methylin, Jornay PM, Adhansia XR, and Cotempla.  In other words, all of these choices contain the exact same active ingredient, methylphenidate.

Why then might one of these choices work well for a given individual while others don’t?   It’s all in the the delivery system. For example, in addition to this liquid and chew, there are pills, an osmotic pump, a patch, and various types of time-release capsules. The delivery system determines how and how fast the medication enters the bloodstream—and the rate in which it exits.

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

Problematic History with Quillivant: Resolved?

Initial interest in the Quillivant products subsided amidst product shortages and, later, a recall. 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.  But drug shortages can happen for any number of reasons.  You can always check supply status at the U.S. Federal Drug Administration’s FDA Drug Shortages.

I asked a Tris company representative for an update and explanations of this medication’s roller-coaster history, including with a 2017 recall:

  • The recall happened when Pfizer owned the company. Tris 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 can present its own kind of problem). I’m aware of  no recalls since that one.You can read more here: CMO for Pfizer ADHD drug hit with US FDA warning

A Few More Details:

Here is an overview of each “Quilli” choice.

Quillivant XR: Liquid Extended-Release Form of MPH

Quillivant XR is a liquid, extended-release formulation of the stimulant methylphenidate (MPH). It’s 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

 

This isn’t the first liquid-stimulant formulation. It might, however, be 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 XR 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 their 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.

Quality Relies on Pharmacist, Consumer Following Instructions

Last I spoke with Tris, there had 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  ignored instructions and opted to mix the solution in alternate containers, including plastic and amber-colored. Why is this a problem? Because, according to Tris, 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 Product? 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.

Full disclosure: I am not a psychopharmacologist. 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. Please ask your pharmacist or prescriber.

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 (e.g. aspartame). 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 Quillichew savings card

Quillivant XR & Quillichew XR Savings Program

Click here to learn about the current Tris Savings program.

If you have questions about the product or the savings program, call 1-844-865-8684.

A Caveat About Fruit-Flavored

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

To my mind, stimulant medications tasting similar to 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.

UPDATE ON CONCERTA GENERICS:

I’ve followed the Concerta generics story since 2014. The latest news is that the authorized-generic (brand sold as a generic) will be discontinued in January, 2023.

Janssen Quietly Ends Concerta Authorized-Generic

Please keep in mind about the comments section: Many first-hand experiences with this medication date to the original post, in 2014.

Some issues have been resolved, as I explained in the post.

Please note that I have never accept  support of any type from the pharmaceutical industry. My advocacy is entirely self-funded. This ongoing report is a public service.

—Gina Pera

About The Author

290 thoughts on “Liquid and Chew “Ritalin”: Quillivant XR & Quillichew XR”

  1. Hello,

    My son recently started taking methylphenidate chewables. He was doing well but then started having bad days again. His teacher is saying he’s very hyper. I’m going to try quillichew finally after a fight with the insurance company. I’m starting to feel hopeless. I don’t know why he went back to his hyper behavior. He has good days and bad days. I cannot seem to figure out what is different on the days he’s having the breakthrough symptoms and hyperactivity.

    1. Hi Sandra,

      I’m unfamiliar with methylphenidate chewable. It must be a generic. Who makes it? (It should say on the label.)

      The Pfizer brand product is Quillichew.

      There could be any of a number of things happening, to create the return to “hyper behavior”. More specifically, “good days and bad days.” For example:

      1. Interactions with Vitamin C and grapefruit juice. I looked for the FDA product insert, to see what’s listed, but cannot find it. You can look on the piece of paper with the small print that came with the bottle.

      2. Erratic sleep. Sleep quantity and quality can greatly effect how well, or poorly, a stimulant works.

      3. Extra cognitive demands on certain days or in certain classes.

      4. The stimulant has gradually exacerbated an anxiety disorder. This is fairly common. Many people with ADHD do best on a stimulant and something to address anxiety/depression. An antidepressant of some type, typically.

      Some find that a low dose of Strattera, in addition to a stimulant, helps in this regard. Some find it makes things worse. It all depends on individual chemistry.

      5. Has anything else changed, either at home or in the classroom?

      good luck sleuthing this and getting the brand. It can at least eliminate several variables.

      g

    2. Hi Sandra,
      You are not alone in the good days/bad days (altho we refer to them here as easy or difficult to listen days which helps my LO feel better about his impulsivity or inability to listen/cooperate.) Some days we can figure it out and some days you just have to shrug and try again the next (while admittedly banging your head against the wall figuratively and perhaps literally.)

      We have noticed that any growth spurt means erratic behavior and likely some tough days (I have an 8yo who elopes – classroom, camp, park, home.) As soon as that passes we are back on track!

      After MUCH trial and error we have a very complicated dosing schedule but it works so I DON’T CARE 🙂

      1.5 ml Quillivant XR just before breakfast (7:30)
      1.0 ml an hour later at school drop off (8:30)
      1.0 ml around noon at school
      1.0 ml additional if we are headed out to the park which also seems to greatly reduce the likelihood of a headache at bedtime (7pm) but requires a melatonin gummy to signal the yawns (not needed without that booster)

      All of which points to the ‘all-day release’ aspect of this as nope!

    3. Hi, Julie. You figured out what works and you have the courage of your convictions! 🙂

      It might be that your son is a rapid metabolizer. In the meantime, good for you!

      g

  2. Quillivant has actually been a lifesaver for us however from start to finish we get less than 5 hours of relief and our psychiatrist doesn’t want to give a booster dose as he also suffers from insomnia. We are loosing our minds with this child. He barely sleeps and is so defiant and out of control I am not sure what to do anymore. Every day is struggle and everything is a fight or an argument. He just turned 6 and we have been struggling with this since he was 3 and every year it just gets worse and worse. No one in my family wants to babysit him because he is too hard to control his older brother who is 18 can’t stand to be around him because he is always trying to hit him, and it just makes for a miserable life, I feel like I am failing my child and I constantly look at him like what happened to my sweet loving adorable boy. I feel hopeless and lost. Please don’t judge me I truly love my child I just don’t know what to do anymore.

    1. Dear TM,

      I’m sorry that you felt it necessary to end with “please don’t judge me I truly love my child.” 🙁

      Of course you do. You wouldn’t be looking so hard for answers to help him live his best life.

      You are not failing your child. The mental-health field is failing your child.

      Is it possible to find another prescriber?

      For one thing, only five hours of symptom mitigation per day is not treatment — it’s nonsense. If that MD doesn’t know better, you’ll have to learn more and advocate advocate advocate.

      Seeking to get more than 5 hours of symptom mitigation/day is not a “booster dose.” It’s treating the symptoms throughout the day and into the evening.

      Another misconception: prescribers who assume that a stimulant being in effect during the nighttime always results in insomnia. Or that a child diagnosed with ADHD who has insomnia cannot take a stimulant. Sometimes, in fact, it helps the child go to sleep and sleep better. Adults, too.

      If your child does get insomnia from the medication, then it might be that a lower dose later in the day would help. Or, perhaps he also has anxiety. In which case, that should be treated.

      It can be difficult to separate the threads. That is, is it ADHD-induced anxiety or an anxiety disorder? Two different things and two different medications.

      Some children benefit from a second medication, such as Intuniv. This is not a first-line treatment for ADHD, but it sometimes can help with the aggression and defiance.

      Overall, if you feel your child gets good symptom mitigation from the Quillivant, he should have that throughout the day and into the evening. (If you haven’t tried it in the evening, you don’t know how it might affect insomnia, positively or negatively. It’s worth a trial, on an evening when being alert, etc. the next day is not important.)

      Please read this article I wrote on ADHD and sleep for CHADD’s Attention magazine. It should explain a lot: https://chadd.org/wp-content/uploads/2018/06/ATTN_12_10_Pera_on_Sleep.pdf

      good luck!
      g

    2. Hi TM,

      I’m so sorry your provider is not supporting you better. As Gina indicated, the fault lies with them, not with you. You are trying.

      What I wanted to tell you is that my 11 year old was in a similar predicament. He had ADHD and also insomnia before he started Methylin. So in addition to Methylin, his paediatrician also gave us Clonidine for his sleep disturbances. The Methylin is ER and runs out about 7-8 pm. Then I give him Clonidine. He typically sleeps through the night or nearly does. And he goes to sleep without a meltdown from hours of trying and still being awake. Both have been game changers.

      I wish you luck and my heart goes out to you.

      All the best,
      RM

    3. Hi TM, I just stumbled across your post while looking for information about orange juice and Quillivant. My daughter is 7 and we’ve struggled the same, so I wanted to first tell you how un-alone you truly are. It feels very isolating, and the whole range of emotions on top of that. Also, I hope you have someone to talk to, whether friends, or therapy. It’s really hard. So from another Mom, I see you and offer you my virtual hugs.
      I wanted to ask if you had tried the quillichew? My daughter metabolizes stimulants very quickly, too. Same thing, 5 hrs, roughly. She’s on the 20 mg dosage. What’s nice about that is that it is scored, meaning you can titrate. I give her half in the morning before school, and the other half when she comes home. She also takes guanfacine er to help with the crash.. because afternoons have been hard FOR YEARS, because of the crash. Obviously you would have to talk to the psychiatrist/prescriber, but this has been the best way so far. She’s almost 8 and we’ve been trying different meds since she was 5. I wish you luck. I also realize this is months later, so hopefully this finds you.

  3. 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

    3. After a few successful years on Quillivant, my son switched to Ritalin when it stopped being manufactured. When I learned that it was available again, I wanted to switch back, as it seemed to be a gentler drug for my kiddo (less rebound effect, longer duration, etc.).

      Well, we’ve had a nightmare week with this experiment! We have discontinued Quillivant and I’ve been doing a little research, which brought me to this thread. I don’t know what has changed, but this time Quillivant produced a reaction and my child became the devil. First day, same dose as previously, my son was practically speaking in tongues. Absolutely wired and out of control. Aggressive, mean, etc. I called the doctor, who encouraged me to stick with it a few more days but give a half dose. Next day was still bad so I gave a quarter dose the next day. A little better but still unable to focus on school. The following day I gave even less and we had a good few days.

      Then Monday, back to a freak show so we discontinued it. It took a couple days until he was back to himself, but man! I’m curious if anyone else has had this experience with Quillivant (liquid) since it has been back in production. It worked beautifully the first time. Thanks!

    4. Hi, I am unsure if I am posting in the correct way as I only saw a reply.

      I am a 44 year old single mom who also suffers from ADD. My 8 year old also has Severe ADHD along with anxiety and sensory processing disorder.

      I’ve tried many different medications for him and 20 mg Focalin works the same as 5 mg Focalin. The effectiveness of the medicine has seemed to level him out finally.

      He takes the 5mg instant release Focalin twice a day. Time release doesn’t work for him at all, as his body burns through it in two hours. That was a real struggle with his pediatrician to get her to understand. Anyway, again the effectiveness of the Focalin is working for his impulsiveness and inability to sit still or concentrate, however, by 4pm he’s rocking and swinging his head, banging into everything, and appears to be coming out of his skin.

      It’s the longevity of the meds that I am struggling with. We had tried another dose of 2.5mg but then he won’t sleep. He was on a non stimulant at one time with an afternoon dose of Focalin, which I loved. Everything was great until his blood pressure spiked and we were forced to go back to only the Focalin.

      I did try the patch for him but it left his hip swollen and blistered.

      I have to be careful with changes in medication because even one day at school without proper medication and they are calling me because he’s out of control. Very disruptive. I am looking for something that lasts until the evening so he can still participate in swim meets etc.

      Any suggestions? Combos? Something? When he’s medicated he’s a different child and much more manageable but when it wears off its a nightmare for us both.

      Struggles to make friends, and well, you get the idea. I have no family and it’s just the two of us, so I am struggling to help my little boy with no support system.

      Not sure what I am expecting but advice would be great. I also struggle with memory function and keeping up with everything.

      I have begun writing most things in a book, when I am not so addled I forget. Thank you in advance for any advice.

      Please no criticism as I do enough of that to myself .

      LM

    5. Dear Lovie,

      I would not dream of criticizing you, but I understand your fear of that.

      The truth is, you are remarkably intelligent, astute, and observant about this issue. I wish all care providers could match your knowledge—and exceed it, so as to help you and your son.

      So, you say that what has worked best so far was an additional dose of 2.5 mg in the afternoons along with a non-stimulant. That seems the best starting point.

      Question: I assume the non-stimulant you/he tried was Strattera? What dosage?

      It might be that a lower dose (e.g. 10-18-25 mg) might help while avoiding the cardiovascular side effects. If the prescriber gives you 10 mg, you can later double if it not enough and still be at a lower-than-average dose.

      He might also take it at a different time. But remember that Strattera builds up in the system over time, so it’s best to wait until increasing the dosage until you have a good “read” of how it’s working.

      (It’s crazy that most people, including many prescribers, see non-stimulants as somehow safer than stimulants; in fact, Strattera has a higher cardiovascular side-effect profile!)

      When you respond, let me know the dosage you tried. If it already was a low dosage, we can brainstorm other avenues.

      Stay strong. You are RIGHT.

      Gina

  4. 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

    2. Hi Anna my son had the WORST reaction to Quillivant. Similar to Jennifer’s experience mentioned above it was like my son was possessed!!!! I cannot begin to explain how much anger he had. His tantrums. He even started saying things like “I want to kill myself!!” I know that was exaggerated emotions from him but it was a godawful stressful situation. There was NOTHING we could do to calm him down. It went on for two nights. I am not continuing the liquid form and am going back to pill form medication for him.

    3. Kayla, that sounds like a nightmare.

      You mean that a methylphenidate pill was better? I wonder if the Quillivant dosage was too high?

      Gina

  5. 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

  6. 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

  7. 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

  8. 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

  9. 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

  10. 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

  11. 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

  12. 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

  13. 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

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  15. 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

  16. 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

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    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

  18. 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

  19. 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

  20. 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

  21. 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

  22. 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

  23. 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

  24. 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

  25. 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!

  26. 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.

  27. 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

  28. 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

  29. 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

  30. 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

  31. 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

  32. 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

  33. 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

  34. Also, my son says every time he takes it “yummm, tastes like bananas!”

    He loves the flavor!

  35. 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

  36. 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

  37. 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

  38. 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

  39. 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

  40. 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

  41. 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

  42. 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

  43. 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. I heard from some mail order senerio that the $20.00 coupon was gone so HMM!!

    7. Well, I went straight to the source for you. Check it out!

      Good luck!
      g

    8. 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

    9. 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

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

    11. 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

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

    13. 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

    14. Target is ordering for next week said $100.00:) Thanks so much for your help..

    15. 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.

    16. 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

    17. 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.

    18. 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

    19. 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

    20. 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

  44. 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

    3. How is it going on 2.5 ML getting ready to start our 7.5 girl ADD next week.

  45. 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

  46. 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

  47. Carol McMahan

    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.

  48. 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

    3. Did you call the mail order they quoted med $150.00 for the 180 ml bottle?

  49. 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

  50. 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

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