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Dec 19 2009

Adios to Intuniv

After eight weeks, we’ve decided to pull A off the Intuniv. Unlike pretty much any other decision we’ve made concerning him, this one was damned easy. There just weren’t the results we had hoped for. I consulted with his teachers, since they see him for so many hours every day, and what I heard was that they hadn’t seen much change in his focus since starting the meds in October. In fact, the teacher he has the most commented that the biggest difference was when he got his glasses and ear filter for the CAPD. So, not a noticeable difference. If she had said that suddenly a different child showed up mid-November, then that’d be a different story.

Along with the lack of focus difference, we were still dealing with the trauma of actually getting the pills down. Those rants can be seen here, here, and here. We gave up long ago and just told him to chew the damned things, not something the FDA recommends, but hell, they needed to get down somehow.

But what really convinced us to throw in the towel were some frightening behavior issues we were seeing. Things like A crying hysterically for hours on end, unable to stop, because his best friend in the whole wide world amen moved away several weeks ago. Things A said like “I want to go to sleep and never wake up” and “I wish I was never born” and “I hate my life.” Red.Flags. He rarely, if ever, cried out such phrases before starting Intuniv. I don’t know if there’s a correlation, but it was frightening enough for us to tell the doctor we wanted to stop, especially since there wasn’t a dramatic change in focus.

So we’re slowly weaning him off the meds. He’ll be off by Christmas and have a couple weeks to recalibrate before going back to school. And…deep breath…we’re not going to pursue any other ADHD meds at this time. While I believe that there is some ADHD something-or-other going on here, I also believe that a great deal of it may just be him being gifted and asynchronous. I’m no longer going to medicate him so that he can try to sit still in school and focus on crap that he’s already learned, or is so simple his brain asphyxiates from lack of something challenging. I’m sure his teachers will notice some increase in lack of focus, and tough shit on them. Ahem.

No more medicating his giftedness and intensities out of him, just to make things easier on us. If this is the way he’s wired, then so be it. Time for us…teachers, family, and friends…to recognize that. He cries that there’s nothing wrong with him, and we shouldn’t change him.

And he’s absolutely right.

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  1. Robin from Israel

    “He cries that there’s nothing wrong with him, and we shouldn’t change him.”

    This broke my heart. Things can be so hard for a child who doesn’t fit the mold, and so hard for their parents when right and wrong are unclear and all you’re really trying to do is make things a bit smoother for them. I’m glad in this case the path was clear – those symptoms you described are some pretty scary stuff.

  2. melissaz

    I need to read your last paragraph about thirty times a day.

  3. Dawn on MDI

    somehow, our society values assimilation far more than the work it takes to accommodate those who cannot fit into an easy mold. It’s going to be work, but you know in your gut what’s right for A. And from the sounds of it, so does he. Good on you all!

  4. ella

    He’s a lucky boy to have you as his mom. Recognizing his gifts as gifts and not burdens to others is a gift you have given him. You are allowing him to be who he is and there is no greater gift to a child.

  5. Nancy Campbell

    I am so glad that you are 100 on your son’s side, and that he has you in his life. You’re tuned in, and doing what he needs. Stick to your guns, my friend.

  6. Cathy

    what a scary experience! thinking of you guys.

  7. corrie

    Mom’s intuition is always the right thing. Hope he gets back to his normal soon.

  8. Krystin

    Thank you for posting this! My son has said the exact same things about hating his life since he has been on Intuniv. Yesterday the school called b/c he passed out and had a seizure at lunch. He has NO history of seizures. They couldn’t get him to wake up for 30 to 45 minutes. EMS took transported him to the ER and he is fine. I’ve read today that fainting is a side effect of Intuniv. I’ve asked his Dr. about weaning him off of the Intuniv. He said we could just stop it, but he has missed only 1 dose in the past and went crazy. Please let me know how you weaned off of the Intuniv. My son takes 2mg. Thanks.

  9. Julie

    I loved your post, especially the last paragraph! My 11-year old daughter is gifted but does have ADHD and struggles with focus issues and some oppositional behavior. She has been on intuniv for a month and we have not seen much improvement and find she is more tired now than ever.

    We are putting her back on the Neu Becalm’d and Neu relieve because I think those supplements help support her brain chemistry imbalance.

    The biggest problem I have is giving in to advice of doctors, teachers and family members who insist she needs to be controlled.

    I think that from now on I’m going to listen to my instincts and stick with what she needs. Two days ago, she decided she never wanted to take meds again because they make her stomach hurt. Unfortunately, I can’t just stop the intuniv because it’s not good for her so we are slowly weaning her off it over the next few weeks.

    The advice I have for anyone reading this is to do what’s best for your child. If the teacher is complaining that they can’t sit still then they need to find something that allows them movement within the classroom. If that doesn’t work, maybe they need a more nurturing teacher or try online classes. We are looking into allowing our middle school daughter to take just one online math course through K-12 and keep her other classes to see if allowing her more sleep in the morning and less pressure at school will help. I’m also looking into a 504 plan so that her teachers will accomodate her needs.

    Glad to read there are others disappointed in this med.

  10. Gina parker

    Thank you, thank you, thank you.

  11. Josh

    Kudos to you for being brave enough to stand up to pharma and doctors recommending your son be medicated. I personally am currently on a regimen of Intuniv and I find it very helpful, but since 14 I have made the majority if not all of my own medication decisions on my own.

    When offered the opportunity to start on ADHD meds at that age I approached the topic with an open mind, though I wish I’d been exposed to the “pills don’t teach skills” paradigm at the same time. I think if offered the opportunity to go back and change anything about my childhood, I’d go back and tell myself that, and suggest that I really ought to learn how to get myself to focus on a task without external reinforcement. Of course I undoubtedly wouldn’t listen to myself, as I never was able to hear people’s advice and execute on it.

    In any case, I think that while different medications can be very beneficial to some children and many adult sufferers of ADHD, the individual taking the meds has to really welcome the shifts they can bring, but also to understand the limitations of those changes and to do other work on themselves to supplement and utilize the expanded capacities the medications bring. While my understanding is that the development of the young brain is one of the periods where medications can have the most pronounced effect, it’s also nearly impossible for a child to conceive of the self and the disorder with the level of complexity really required to envision these changes and enhancements. This is the unfortunate paradox of ADHD being a developmental disorder; the individual has a slowed development process, but they cannot really perceive or comprehend that problem until they reach a certain level of development, and without their cooperation and engagement, medications are minimally effective solutions. It is a truly heart-wrenching dilemma.

    This is a bit late, and I think I’ll peruse the rest of your blog to see how the past 4 years have been to your son, but bravo! to you as a parent for accepting your child’s individuality over the perspective that he is an extension or reflection of your own individuality.

    1. Jen

      Hey Josh, thanks for your comment. If you’ve poked around here a bit, you’ve probably seen that our son has been on and off meds for some time. He’s currently on a very low dose and it’s helping him. He can focus and concentrate, which is sorely lacking when he’s not on meds. Because of concerns about his appetite and weight, we took him off last December. Learned a few things from that debacle. First and foremost, the holidays is a puke poor time to take a kid off meds. Also, his appetite/weight did not increase, and attention/activity was all over god’s creation. It was a long month.
      You’re right, pills don’t teach skills, but they sure help as scaffolding to get those skills lessons through the skull. Our son has been on meds for seven years now, and I shudder to think of where he’d be if we hadn’t made that decision, one made after a full year looking for ANY other possible diagnosis. We hope he’ll eventually be able to wean off meds, as my brother was able to do, when he gets older and can use the skills he learned while on pills.
      I wish every day that our son doesn’t have to go through this, heart-wrenching indeed. But it’s who he is and the challenge he has in front of him.

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