Genetic Testing for ADHD Medications: 1

Genetic-testing for ADHD Medications

 

People often ask me, “Gina, what’s the best medication for ADHD?” No one wants to hear the answer: “It depends.” These days, they also ask me about genetic testing for ADHD medications. That is, DNA tests to help identify the best medication for a person with ADHD. Sorry to say, we are not there yet.

Hence this 7-part blog series: Genetic Testing for ADHD Medications: What Your Genes Might Tell You That Your Doctor Cannot.  Look for the next six posts each Wednesday for the next six weeks. You’ll find them listed at the end of this post.

Finding effective ADHD medication therapy is highly individualistic. We lack a way to reliably predict which ADHD medication might work best for any one individual. With the advent of genetic testing, that is beginning to change.  But only that: beginning.  Failing to understand the benefit—and lack thereof—risks depriving you or your loved one of evidence-based treatment.

Meanwhile, the tried and true approach remains the most reliable method:

  1. Identify symptoms that might respond to medication
  2. Carefully track the response over time, and
  3. Try at least one choice from each stimulant class (amphetamine and methylphenidate)—and several different delivery systems, if possible.

Overview

This is a longer-than-average post. Here is a bird’s eye view:

  1. Why and how genetic testing for ADHD medications is widely misinterpreted and misused—with potentially disastrous consequences
  2. What are our (Gina Pera and husband) qualifications for writing this series?
  3. The trouble with current prescribing patterns; it will take lots more than misinterpreted genetic testing to improve!
  4. Pin the Rx on the ADHDer: too often the standard of care
  5. Are ADHD meds an easy fix?  Ha!
  6. Introducing the term pharmacogenomics: It’s the study of genetic differences that explain, at least in part, our individual responses to drugs
  7. A linked list of all posts in this series

Warning: Genetic Testing Widely Misused

Unfortunately, physicians and consumers alike are misusing these tests.

Why did we write this series?  Because for too long I’ve heard too many parents say, “ADHD medications gene-testing said my child could not take a stimulant.”  That is absolutely untrue—and extremely alarming.

Stimulants are the first-line treatment for ADHD. Yet they often show up in the third “extreme caution” column of this testing report. In this series, we explain why this tends to happen.  But for now, please know this: We cannot eliminate the entire category of medications on the basis of misreading a test. Too much is at stake.

To repeat: This testing cannot predict which medication will work best for an individual. It can indicate if some medications will be especially problematic, given the individual’s gene mutations. But even then, the most it can reliably tell you if you should take an extra-low or extra-high dose of a medication. It should be used as one tool, however, and perhaps only after a methodical treatment approach has failed.

My husband and I share our gene reports later. While we went through a company that is no longer offering the testing (Harmonyx), the same information applies. The dominant player in this field now seems to be Genesight. [Update: Genomind is a later entrant to the field.]

Who Are We?

With all humility, I can’t think of a pair better qualified to educate the public on this important issue. We are an internationally recognized ADHD expert, author, and advocate—and her scientist husband who happens to have ADHD.

Gina Pera and Dr. Goat

 

Dr. Goat

My husband  (“Dr. Goat”) and I wrote the series. He is a molecular biologist with a strong emphasis in genomics and data mining—and he takes medication for ADHD. Moreover, he remembers the parade of prescribers whose detached incompetence resulted in one disaster after another. This changed only when I stepped in.

His nickname is Dr. Goat. Because he is not writing professionally here, we’ll stick with that.  He is happy to help make sure that other people with ADHD get the science-based help they deserve.

Gina Pera

I am an advocate and educator who has heard 1,000s of medication-gone-wrong/right stories. Because I hear and remember the details of the consequences, I passionately work to improve the odds of good outcomes.

Readers say I have a knack for translating complex ideas into simpler, layperson’s terms. This topic, however, was a challenge! It took us weeks—and many drafts back and forth. But I think you will learn as much as I did if you take it slowly.

By way of background, I am the author of a bestselling book on Adult ADHD, especially as it affects relationships: Is It You, Me, or Adult A.D.D.? It’s the first and still the only consumer book to actually detail an effective way to approach ADHD medication. Others, for the most part, say, “talk to your doctor.”  Sorry, that is not enough.

For the most part, mental-health professionals who are not physicians or other licensed prescribers cannot—by the terms of their licensing—advise on psychiatric medications.

By contrast, I am not limited by a license. My career as an award-winning print journalist reflects strong respect for the facts. I never stop being aware that, when it comes to ADHD science, real lives hang in the balance. You are not an abstraction to me. Nor are you to my scientist husband.

My second book, with Arthur L. Robin, PhD., came out in January 2016. He is a veteran highly regarded ADHD expert whose career involved training psychologists in a hospital setting.  It’s called ADHD-Focused Couple Therapy: Clinical Interventions ((Routledge, January 2016).

My work has been endorsed by many preeminent authorities in the field of ADHD and of couple therapy.

The Trouble With Current Prescribing Patterns

To be clear:

  • We have strong data showing the effectiveness of ADHD medications for people with ADHD in general.
  • We also have common-sense methods of selecting medications for trial by an individual person, as described in my book.

But the trial-and-error process can involve weeks of

  • Titration (dosage-adjusting),
  • Procuring this or that medication
  • Wrangling with the insurance company or poorly supplied pharmacy
  • Trying to obtain  brand over generic (because who needs an extra wild card in all this, especially in the beginning?),
  • Teasing out what is “side effect” and what is the medication exacerbating a co-existing condition, and
  • Making several trips to the doctor, who might or might not even be a skilled prescriber.

Given that many adults try medication only when they are in crisis, this is especially problematic. When in a crisis—with a job or marriage hanging in the balance—there is little margin for error.

ADHD, DNA, and Predicting Medication ResponsePin The Med On the ADHDer?

Let’s be honest: Most prescribing physicians are just not that expert at treating ADHD. Surveys underscore that. To be sure, you will find excellent exceptions. Unfortunately, however, you simply can’t expect that the average psychiatrist (or another prescribing physician) to know much more than you do after reading a few good articles or books.

Please trust me on this: Self-education and self-advocacy are mandatory.

In fact, when it comes to predicting an individual’s response to a particular medication—stimulant, non-stimulant, one class or stimulant or the other—it’s too often a game of what I call Meds Roulette. Or even Pin the Tail on the Donkey. Remember how that childhood party game is played? A blindfolded person tries to pin the tail where it should be on the donkey.

I call this adaptation Pin the Rx on the ADHDer.  It doesn’t have to be this random. There can be a methodical approach.   But genetic-testing is not that approach.

ADHD Meds An “Easy Fix”? HA!

Perhaps the biggest ADHD myth floating around is this: ADHD medication treatment is an “easy fix.” Yes, a minority of people do luck out: They quickly find a medication that works well for them or they find a skilled prescriber. I’m glad for them—but concerned for the rest.

There’s a reason my first book (Is It You, Me, or Adult A.D.D.?) includes a detailed section on medication. The goal? I empowering ADHD-challenged individuals and couples to work pro-actively with their physicians.

Arthur Robin, PhD, and I included a full chapter for couple therapists in Adult ADHD-Focused Couple Therapy: Clinical Interventions (Routledge, January 2016). Prescribing physicians often have only a few minutes with clients. This means they know very little about their patients, especially if they aren’t using rating scales and getting feedback from a loved one.

Therapists, however, have more time to help target behaviors that might be addressed by medication and to track progress over time. Therapists cannot specifically offer medication guidance. But they are well within their “wheelhouse” in performing this function.

The evidence that medication is the single most powerful tool in the ADHD toolbox is there—and has been for years.

If you choose to include medication in your treatment plans, being pro-active about your own medical care, or that of a loved one, is not a luxury. I believe it is a necessity.

 

Introducing: Pharmacogenomics (or Pharmacogenetics)

I know. That’s a mouthful. Don’t worry. We’re going to walk you through it.

Here goes.  We’ve always known that different people react differently to the same medications. Finally, we are beginning to understand why.

That means we can now benefit from new genetic testing that helps predict how a certain medication will work with our particular genes. This is one tool furthering the “personalized medicine” movement.

The field is called pharmacogenomics, or sometimes pharmacogenetics. It’s the study of genetic differences that determine our individual responses to drugs, whether positively and negatively.

The value of such genetic testing is why the FDA has posted a table of 150 FDA-approved drugs with pharmacogenomic information in their labeling.

 

Pharmacogenomics: the study of

genetic differences that

determine our individual

responses to medication.

The field of pharmacogenomics has broader implications, too. For example, it is being used to identify medications that, while not shown effective in large populations, might be effective in sub-populations. This is important. The state of drug discovery is such that we’ve already hit most of the “targets”. Inroads will be made not so much by discovering new medications but by finding other uses for existing medications.

So, What’s the Bottom Line Here?

Does the advent of genetic testing for ADHD medications make it suddenly a snap to find an effective medication—at the right dose? Sorry, no. Human brains are like snowflakes: no two alike. Moreover, the brain’s complexity makes a snowflake look like a simple dot.

Plus, there are so many other factors that contribute to an individual’s response to a medication—including weight, overall health, age, and other lifestyle factors. But, increasingly, new ways of gathering data are helping to inform treatment decisions.

Look for the next post in this seven-part weekly series. Dr. Goat and I will help you to make sense of this new information.

All the Posts in This Series

Part 1 (this post) of this series provides an overview of the topic (click on the blue number to visit that post).

2 Shares genetic testing results for my husband and I, along with my husband’s reactions to seeing the “hard data” related to his ADHD diagnosis.

3 Dives into the details of genotyping, or genetic testing: what does the term mean?

4  Examines “when and why” to pursue genetic testing—the real-world value and usage

5 Covers the limits of genetic testing for ADHD medications

6 Brings it all together with a closer look at our personal testing results and real-life application of the findings, beginning with Gina’s results

7  …and continuing with Dr. Goat’s personal test results.

Blog subscribers will also receive notice of this presentation when it’s available as a video presentation. 

—Gina Pera

25 thoughts on “Genetic Testing for ADHD Medications: 1”

  1. Thank you for this post and also to commentators, i believe after reading both, no one will have further questions. As you said, Post is little longer, but worth to read.

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  3. Great article, I’m looking forward to reading the rest. I’m also in the middle of your book and I’m learning so much about ADHD and finding the best help for myself.

    But now I have this fear…

    Recently, I’ve just been diagnosed with mild ADHD-PI after taking a computer test and a couple take home questionnaires for myself and SO. Then after talking briefly with a psychiatrist, she gave me 10mg adderall XR (which I think is a starter dose?) to be taken once in the morning. I haven’t taken it yet. And, after reading all these comments, I’m not even sure the psych did enough to evaluate me correctly for the right drug and dose. There were no blood tests, or EKG’s or anything like that.

    In addition, my SO is scared and irritated that I even possibly need these meds and she doesn’t want me to become an addict or change for the worse. Most of the stories I’ve read from you, so far, is the person with ADHD is in denial or resistant to treatment. However, in my case, I’m open to treatments and I’ve been working really hard to improve myself, but my SO feels like I don’t need these meds. She says she can put up with my quirks, spaciness, and forgetfulness. But for myself, I can’t stand my inaction, and time + effort to even get the littlest things done.

    1. Hi Steven,

      Thanks for letting me know you like the posts. My sister just wrote to say, “Gina, this stuff is technical. Are you sure people are reading it?” 🙂 Yes, my analytics say there’s quite a strong interest!

      As for your situation with your wife, please check out p. 277, which in part reads:

      In Jeanette’s case, the irony is that she never found her husband’s ADHD a problem—until after he started medical treatment for it. “I used to go to bed at night thinking I’m the luckiest wife in the world,” she recalls. “Yes, Mike is lousy at paperwork and he doesn’t remember to take
      out the garbage (or what day it’s collected!), but he is fun, very goodhearted, and rarely gets angry, and loves being with me and the children.

      All that changed soon after Mike learned that he might have ADHD and decided to do something about it. He had recognized in himself the traits he didn’t like in his father, including poor follow-through on promises, and wanted to do a better job with his own family. “His attitude was, ‘If treatment can help me to be a better person, why not?” Jeanette recalls.
      Unfortunately, under the first physician’s care, Mike’s personality changed completely after starting medication.

      “Medication seemed to be a miracle worker at first, but then it ended up making him angry all the time,” Jeanette explains. “I went from this perfect marriage to hating my
      life and being ready to leave him.

      The worst part was that he didn’t realize that things were getting worse, especially the anger, until we were in
      major trouble. As far as he was concerned, his focus was better so that was great. But in reality, his focus was unrelenting.”

      Maybe this is what your wife is afraid of, and with good reason. Especially when trying Adderall.

      It might work well for you. Or it might intensify any irritability/anger that you wrestle with.

      Anecdotally, Adderall seems to cause less significant side effects among people with ADHD who have the Primarily Inattentive presentation, as you indicate you were diagnosed.

      So, it might be fine for you. It’s worth a trial, at any rate, especially if you’ve had your limit of inaction and having to put forth so much effort for little reward.

      You could try explaining to your wife the nature and extent of your struggles. Also, explain to her that you will do this together. That she will give feedback. And that the medication lasts for only a short while. It will be out of your system, if the effect is adverse.

      Possibly, she is more concerned with the unknown—especially given all the hysterical propaganda online about ADHD medications. And once the true effect is known, she’ll be more understanding. Especially if you feel better.

      But do watch for any increased irritability. And don’t consume caffeine when you try it (or cigarettes).

      And keep reading that chapter! Highlight and underline it! 🙂

      best,
      g

    2. Thanks for the reply. I’m very grateful for your info. I’ve done more research on myself and I actually fit SCT to a T. I have no problems with impulsiveness or hyperactivity. I’m more withdrawn socially and fit the sluggo description you’ve mentioned before. And the story of the lady that struggled from 9th grade on in your post on SCT , described me perfectly.

      After learning about the few studies on that I feel like I should be trying very low doses of mph or straterra.

      I’m not going to try the adderall that I was prescribed until I have tried everything else.

      Now my SO and I are about to start couples therapy to help with coping strategies during my time of finding the right treatments and/or medication.

      Have you learned or read anything new on SCT treatments?

    3. Hi Steve,

      I’m not up on the latest with SCT.

      In my observation (can’t cite research on this), the AMP class of stimulants actually might work better with SCT than it does for other types of ADHD. It actually makes more sense to try the Adderall now, before Strattera. Strattera takes a while to build up in the system; you could wait weeks. With Adderall, you will know pretty much right away if it’s going to be helpful. (But as with any medication, start low….).

      Meanwhile, check out Dr. Barkley’s videos on SCT. Here’s one, and the YouTube queue will show more.

      https://www.youtube.com/watch?v=ME4UoIWCs4s

      g

  4. I know I do well on short acting dexedrine but I use the Daytrana patch because it is the only one that doesn’t have those rotten moods and energy levels and anxiety when it wears off. The long acting oral meds are the worst and I only get 5-6 hours out of any long acting med. And short acting Dexedrine is too many pills and every 2.5 hours. I know they are making a Dextroamphetamine patch in the trials but I suspect the company is just waiting for Daytrana to go off patent since that seems to be how they operate these days. Plus, generics when switched with me are like a new medication and I get the side effects. I have to fight to keep Daytrana though.

    1. Hi Matt,

      Definitely, the AMP Rx (Dex, Adderall, etc.) seem to be associated with that nasty drop. A medication such as Strattera, as a companion to the stimulants and at a low dosage (25 mg to 40 mg) seems to help many people avoid the side effects of the stimulants on-off.

      Thanks for your comment.
      g

    2. Hi Matt,

      I’m not sure why I never replied. So sorry.

      I encounter so few people using Daytrana.

      I recommend it as a first trial to people who are very fearful of medication. The fact that they can remove the patch gives them a feeling of control.

      It also seems useful that it stops working only when you take it off (within reason).

      I think the original company sold it when so many problems surfaced with the adhesive (creating rashes, etc.). I hear this is a problem with many patch drugs, not particular to Daytrana.

      It’s very hard to get some docs to consider new options. And then there are the insurance company formularies.

      I’m glad it’s working for you and that you continue to have access.

      Gina Pera

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  6. Wow, the comments on this post are promising to be as valuable as the post itself. Thanks for starting such a meaty conversation!

    The only other book I’ve found that does an good job addressing medication is Wes Crenshaw’s I Always Want to Be Where I’m Not. Have you read it? It’s kind of new on the scene and clearly more useful for the 30-and-under set, but often ADHD adults have missed some steps in their emotional development and would benefit greatly from reading even if they’re over 30. The chapter on medication was especially useful for all ages, I thought.

    My husband is a tough medication case. I’m looking forward to reading this series and deciding whether I want to encourage him to add some data points with a genetic test. He’s tried Ritalin, Adderall, and Vyvanse, and while all help him “not be an asshole” (his words, not mine), none have seemed to help much with his crippling hyperfocus, which — so ironically — threatens to keep him from achieving (or even setting) any of his big goals in life.

    1. HI Jaclyn — That might be the anxiety piece that your husband is dealing with.

      g

  7. Gina,

    I cannot tell you how much I am looking forward to this series!

    My now young-adult daughter has had the worst experiences with medications you can possibly imagine. She currently uses vitamins/minerals/aminos/herbals to treat, which have been far better for her than the meds, though I suspect is at least in part because they are gentler, so even when we or her integrative neurologist make a ‘wrong’ choice, the downsides are gentler too.

    I am a scientist wanna-be, and have been following the genetic literature since the late ’90s. My daughter’s personal genetic inquiry began in 2008 when we insisted that her then-doc do the cyp450 testing when she was still a teen and continuing to have the most contradictory responses to meds (e.g. high multiple daily doses of even long-acting formulations were necessary to maintain any positive benefit at all, but even that was short-lived as physical and emotional side effects soon hit with a vengeance). And yes, she did turn out to be one of the 2-3% of caucasians who are 2d6 ultra-rapid metabolizers!

    She has since done other genetic testing as well, some helpful and some I’d call “premature” because the science is still so far from seeing and understanding the full picture.

    I can’t wait to read the next post!

    1. HI Lattegirl,

      We’re so grateful that you’re looking forward to this series. It took quite a bit of work!

      And bravo for you, for sleuthing on your girl’s behalf. One of the 2-3%….who would have known otherwise!

      g

      tx
      g

  8. Excellent piece Gina!
    These additional genomic parameters significantly improve treatment outcomes and predictability – and are increasingly supported by insurance companies. Just back from the American Psychiatric Association in Toronto and the excellent news is that several presentations addressed these issues, and attendees showed considerable interest in the various companies with demos for lab measurements.

    Noteworthy:
    1. The Cytochrome P450 is finally becoming more important to the everyday practitioner, as addressed in your book years ago.
    2. New investigations on even deeper neurophysiology involving transporters on the presynaptic nerves and their epigenetics are even more interesting and easily measurable.
    3. Several key issues arise on Transporters: Epigenetics and the methylation process as a switch for those transporters, and the importance of moving beyond the limited fascination with MTHFR testing.
    4. And the importance of Copper and Zinc metabolism.
    5. And the relevance of Kryptopyrrols as neurotransmitter modifiers.

    These several issues are reviewed by Dr Walsh at The Walsh Institute and in this page with an assembly of posts that summarize his work: http://corepsych.com/walsh-resources.

    Thanks g, and give Dr G a big high five from out here in Virginia!
    Chuck

    1. HI Chuck,

      Wow, thanks so much for that update from APA.

      So glad to hear about emphasis of copper and zinc metabolism. I once attended a lecture at the CHADD conference from a Bay Area pediatric ADHD “expert” — where he called zinc a “rare mineral.” [headdesk]

      Thanks for the summary to Walsh’s work. Very interesting.

      Have a lovely weekend in VA!
      g

  9. This is going to be really good. I got lucky and found a skilled, well everything, to be honest. While I had a short stay in a hospital, all the doctors there told me I can’t still be having a side effect of a long-acting (non-ADHD) medication and he was thinking about why might I still be feeling that. The answer was in my genetics.

    He’s also the kind of person who can help me with understanding if or why some information I found is true, like Intuniv is an ADHD med that can be used off-label for orthostatic tachycardia and one theory about THAT is people have too much norepinephrine in their bloodstream. So I was like wait, wut? How’s that work it increases norepinephrine in the brain (prefrontal cortex specifically) and decreases it in your blood? It works by binding to receptors presynaptically except in the prefrontal cortex, where it acts postsynaptically. We didn’t go into the why there’s a difference but he did teach me what that means.

    And he asked me to explain some other stuff I learned because I asked another doctor what is kind of an unanswerable question and he usually knows the answer to anything mostly off the top of his head but this time he told me where to start and if I figure it out teach him lol. The word “substrate” has a different meaning in biology / neurochemistry than the areas I’ve worked in and I couldn’t figure out what was being explained until a complex example that was en example of metabolism through the liver. There were several simple things before it but nope didn’t help I needed the hard one with the big diagram I had to scroll around to see lol and I was like OHHH the substrate CHANGES, not the stuff binding to it! Then I thought “well that’s a dumb word to use for something that’s an underlying structure – it got destroyed in the example.” That just shows how much context matters when using a word! And in the process of trying to figure out what something does, I learned a lot of new words that helped me figure out how my meds work but can’t remember them exactly… So he asked me again another time and I’m starting to remember. And I think the answer to the question I asked the other doctor is pretty much “everything” to the what does this system do part and the how does it work part is um well he wouldn’t give me a book to look at because anything printed would be out of date by the time it was published for a good reason. Looks like I took an interest in something current and if I ever decide to be a scientist when I grow up I think there’s work out there 😉

    What do ya think, Gina? Are these guys keepers or what? I’m looking forward to the rest of this and I know one of them will probably be interested too. Thanks for doing this.

    1. Wow, yes, keepers indeed. Lucky you!

      It’s hard to understand any of this stuff without a strong foundation of cellular+ biology. Biology was one of my favorite subjects in collect, and I’ve read some of my husband’s textbooks, but I don’t pretend to be even an amateur biologist. I just try to translate into “lay speak.”

      You’re welcome! Thanks for reading!

      g

  10. Penny Williams

    I’m very interested to see your personal results and what it has meant for your husband’s treatment. My son is a tough medication case — he is super-sensitive and has severe bad reactions to anti-depressants and mood drugs. I have a list of a handful of meds he has had frightening reactions to. We have done two of these genetic tests, and every single one of the meds he had a severe reaction too were listed in the green on his test results — meaning the results showed no genetic predisposition to have a bad reaction. In his case, these tests would not have predicted any of his bad medication outcomes. In fact, only one medication came up in the caution category and only on one of the two tests — Ativan, which he has never tried.

    So, you can see why I’m very skeptical of the true value of these tests. I think they have been given too much leeway to market them as a true predictor instead of looking at just one of many many elements of medication success or failure. I moderate the forum for ADDitude and it’s all a buzz the last couple months with people saying, “oh, just take the genetic test to see what medication will work for you, or your child.” It’s not that simple, not by a long shot.

    I will say, the one positive I personally see with these tests is that you can get MTHFR polymorphism results with these tests, at a fraction of the cost of the tests typically used for that (I think we paid about $500 for that test for my son a few years ago).

    Looking forward to the rest of the series!

    Penny Williams
    Author of “What to Expect When You’re Not Expecting ADHD” and “Boy Without Instructions: Surviving the Learning Curve of Parenting a Child with ADHD”
    ParentingADHDChildren.com

    1. HI Penny,

      My husband has been a working biologist, in private industry and academia, for 20 years in the field of bioinformatics and genomics. He is the last person to make any claims about a “silver bullet.”

      Or maybe I’m the last person. It’s one of us, at any rate. 🙂

      You’ll see in future posts how we gradually put these tests in context, as one factor in the medication-response puzzle.

      Of course, no matter how many disclaimers are written about these products, some people really do want a “silver bullet”—and it’s hard to blame them. Perhaps Additude readers skew more toward that, as its articles are simplified, often to the point of being simplistic.

      People with ADHD in particular can have a hard time negotiating all the complexities around treatment—finding a competent care provider, wrangling with insurance coverage (not to mention pharmacists and pharmacy supplies), school issues, etc. It can be overwhelming to anyone, but especially people with ADHD trying to help their child.

      This Harmonyx test is $80, not a lot of money for the information you receive. It’s not the full picture, but it is data, and that’s something that seldom figures into the medical treatment of people with ADHD.

      I’m sorry you and your boy have had such a hard time with medication-reactions. Anyone can have a bad reaction to a medication that is ill-advised for them. That is, perhaps his diagnosis needs refinement. Even though the Harmonyx testing told me I had no problem with any of the medications (you’ll see that in next post), that doesn’t I’ll do well on those medications. Because I don’t need them. I don’t have the problems those medications are designed to treat. So, I couldn’t expect to get positive results from those medications.

      So, see, it’s only one piece of the puzzle. You can’t take the test to see what medication you NEED (that is, for diagnostic purposes), only which ones you will metabolize normally.

      G

    2. Hi Penny,

      I am a 44 year old version of your son. I too am VERY hyper-sensitive to medication. I was first diagnosed with Adult ADHD at age 40 while dealing with major anxiety attack that led to 2 weeks of intensive work at a behavioral health hospital. It was there, on day 7, that one of the psychiatrists introduced me to ADHD and I received my “ah-ha” moment when the previous 30 years of struggles in my life finally made sense, I finally had discovered the “Why am I like this…” answer.

      But it’s not been a great 4 years of discovery and recovery since that moment. I’ve had moments when things felt way worse than before I ever knew what ADHD was. But I’ve also had a handful of clarity moments as well, when it seemed the fog had lifted, when I could finally exhale and relax, when the world made sense and my mind allowed me to be in control for once, when it seemed all the struggle was over and the fight for normalcy had been won.

      But those moments were fleeting which subsequently led to greater depression. I had seen the light and wanted more, I had felt the calm and wanted it again. I was now addicted to “finding normal.”
      But back to the hyper-sensitivity to medication. For every new pill we tried, for every change up or down in dosage, it compounded the other issues I was facing. You see, I struggle with the two major comorbid disorders associated to ADHD, Anxiety and Depression.

      Using Gina’s analogy of trying to “Pin the Rx on the ADHDer”, my problem is that I own three donkeys! Pin the tail on the wrong donkey and it goes irate. So what do most doctors do? Add more tails for the other donkeys…oops…wrong tail on the wrong donkey, try again… Now throwing more tails, different tails, bigger tails, smaller tails… still all we have are three pissed off donkeys making an ass out of their owner, Me! I found that I can’t control three donkeys at once, they’re all too hyper-sensitive.

      So now I just have one tail that I’ve pinned on the biggest, meanest donkey, the one that started it all, Anxiety. The other two still run rampant, but we’ve been trying to tame them with behavioral therapy.
      My ADHD donkey is still the most elusive and erratic, but I’ve owned him the longest and have unconsciously learned to mitigate him through the years. But ADHD is the disorder that I want to be control of the most. To understand and be able to affect at will. Because now I have two young boys, 8 and 12, that are both now beginning their paths “led by the donkey,” while the majority of the donkeyless judge and command conformity.

      I’ve taken the $500 DNA test too, a few years ago, and the meds listed to try were tried. The meds listed to avoid were even tried. The only thing left is the golden pill that hasn’t been found yet.

      I’ve thought about taking the new $80 test to see if it garners the same results. Who knows?

      Thank you Penny for sharing your perspectives. It is reassuring to see that I’m not the only one. And thank you Gina for research and writings. They all help a little and I look forward to the rest of the series.

      Jeff

    3. HI Jeff,

      Thanks for reading, and for your comment.

      What a masterpiece on donkeys you’ve written, especially “still all we have are three pissed off donkeys making an ass out of their owner.”

      Still, I’m sorry to read that you’ve been taken for such a ride.

      From clients, I hear “dumb doctor” stories every day. Truly, I am surprised by nothing anymore. The sheer recklessness is astounding. Failing to follow even the most basic protocols (e.g. “star low, titrate slow, etc.).

      But even when working with a skilled prescriber and doing your part (e.g. eating well, avoiding caffeine, getting regular exercise and sleep—all of which, I know, ADHD itself can thwart), there still so many factors.

      Some factors are genetic, and they might involve how you metabolize folate, for example. Or they might affect ability to absorb nutrients from food, so you might be very low in zinc, vitamin D, and other nutrients key to neurotransmitter production and function.

      Bill Walsh is doing some interesting work in this area. http://www.walshinstitute.org/william-j-walsh-phd.html

      Meanwhile, good luck and hang in there!

      g

  11. Great start and always wonderfully written. Looking forward to the full series.

    I believe there is a little typo, maybe a missing word, in the following paragraph:
    “The value of such genetic testing is why the FDA has posted a with pharmacogenomic information in their labeling.”

    Mike

    1. Ack! Thank you, Mike! I’ll fix that right away. Thank you!

      Here is it. MS-Word didn’t let me past the link from the file into WordPress:

      The value of such genetic testing is why the FDA has posted a table of 150 FDA-approved drugs with pharmacogenomic information in their labeling.

      Here: http://www.fda.gov/drugs/scienceresearch/researchareas/pharmacogenetics/ucm083378.htm

      tx!
      g

      http://www.fda.gov/drugs/scienceresearch/researchareas/pharmacogenetics/ucm083378.htm

      g

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