I have read three articles in the past few days talking about how ADHD medications have saved a kids life. Let’s get this out of the way. I am glad medications have worked for some people. I am. There are a percent of kids that drugs are not the best option. They are in the minority but are still part of the ADHD community. I have never read one article on a popular ADHD blogs, Huffington Post, or CHADD about what parents have done when ADHD meds were not a possibility or a hard medical choice.
We have not tried ADHD meds and have been discouraged from medicating Ryan for a few reasons. Ryan was having seizures and is no longer on seizure meds. ADHD meds lower the seizure threshold. He had some rare and serious side effects to every brain medication he has ever taken. Some of the meds he took made him psychotic, literally hallucinating and could not leave his room as I stood holding the door shut on the other side. After ten months on one anti seizure medication Ryan developed a never heard of before allergy to the medicine. After the dose of medicine for a few days he had worse and worse reactions till we decided to hit the emergency room. We were in the emergency room at CHOP while the doctors took pictures of his swelling red face, scratching their heads, not knowing what to do. We wound up admitted with an on the fly epilepsy med change. It was awful. After three weeks Ryan was on another med that was making behave irrationally and insanely when the neurologist decided to go without the drugs because the drugs were causing too many side effects. Luckily Ryan has not had a seizure although he is now suffering low tone due to being a kid who had seizures. The neurologist said that Ryan’s EEG may still be abnormal but as long as there are no seizures we are in a good place and PT can help his tone issues.
When we saw the developmental pediatrician last in the spring we discussed Ryan’s family history of atrial_fibrillation. My husband has atrial fibrillation and had surgery called a cardioversion which lasted seven hours, hours longer than a normal cardioversion because of the weird placement of the errant node. Ryan’s grandmother also has this problem, as well as his uncles, and aunt. That is considered a strong family history and we need to be careful Were Ryan to start ADHD drugs he would have to have monthly electrocardiograms and halter monitors worn for 24 hours every three months because people with atrial fibrillation can’t take ADHD medication stimulant or non-stimulants. Atrial fibrillation is something that develops over time so he would have to be closely monitored as long as he was on ADHD meds.
These are HUGE reasons for us to try other therapies for ADHD. We do things to help, high protein diet in the morning does wonders for his symptoms, we have all kinds of systems to help him keep organized, Ryan swim competitively nine months of the year and excercises everyday, he has a TSS in school and his last report card was mostly A’s and B’s, we look for what he does right daily, he has behavioral therapy weekly, he has OT to address some of his sensory issues, and PT for the tone. It is working. Ryan is easier to live with every year. He is impulsive but even that lessens with every year. He at times is a super cool kid.
I am tired of reading articles that tell me that kids who don’t take ADHD meds wind up in jail. Or articles talking about how their kids could not “soar” without meds or withholding ADHD drugs is like not giving a kid glasses or insulin when they need them. It is so guilt inducing that I am not doing my best for my kid by not giving him powerful drugs that could be dangerous for him. Of course, I want to do what is best for him but drugs may not be the right choice for every kid.
The amazing thing I found at the ADHD Aware Leadership Conference was a complete judgement free zone for those who medicate and those who do not. I have gotten emails talking about Ryan’s enthusiasm and excitement at the conference and his positive virtues. This summer he has had completely sublime moments. As we get further from the worst school year ever he is finding what he is good at and is happier than he has been in a long time. We are doing our summer school and it is going well.
I hate it has taken so long to find any support or community in this fight. The medicate or not medicate fight feels eerily familiar like the stay at home Mom’s VS the working Mom’s. We need to stop judging each others decisions and support EVERYONE who has ADHD. Everyone who has the disorder struggles, medicated or not. Everyone with the disorder needs to be educated, live in the world, and should have a chance to soar without judgement.
July 12, 2012 at 8:30 am
I think you know very well my views about Pharma on this and many other issues. Medication is not medical treatment by gross definition, but they try and make it that way because it is both easier and more profitable. Support or not, stay on the path you know is right for you and your children. There is no blanket solution for any of the quirks in living that show up along the way. This post is popular with me, at least…
July 12, 2012 at 8:32 am
You are a terrific mother. You’re doing the best for your boys, try not to let these articles get you down. I studied Special Education for awhile and the classes I took clearly stated that the meds don’t work for all kids–no matter what their conditions. Every person is unique and has to be treated as such. What works for one person won’t necessarily work for another. Keep doing what works best for your family and just stick with it. No guilt needed
July 12, 2012 at 9:03 am
Lets not forget that the medication for a hyperactive child is…….SPEED! Yay! lets give kids a legal speed and pretend there are no long term side effects on the heart. Long term affects of stimulant based drugs, nicotine, crystal meth, cocaine, (not including light amounts of caffeine) are irregular heart beats, high blood pressure, stroke, and early heart attacks. And if they don’t get the dosing right for kids, they can hallucinate as well from having too much adderall or ritalin. Plus the experts still don’t completely understand why stimulants help focus a kid with ADHD in the brain.
I’m not usually anti-drug companies, but I really am when it comes to ADHD/ADD because of how overprescribed and overdiagnosed the condition is.
July 12, 2012 at 9:24 am
I’m not really sure what to put here, but I’m compelled to say I really like this post. I like that you’ve take every piece of your child and have looked at all sides and are choosing the best for him, instead of just going with the Pharma flow. (Does that make sense?) My 9yo has epilepsy and is medicated, the medication has caused ADHD-type symptoms. I worry constantly whether it will correct itself if he’s ever able to get off the meds, or if this is who he will be for life. We do what we can with regards to health and activity, but it is a constant struggle in my brain about the meds and what they are doing to his body.
July 12, 2012 at 9:34 am
As with all kinds of mental illness people are quick to jump onto the “meds are the only way” wagon. I say this as someone who has benefited greatly from my own meds. I aspire to the day that I can wean off of them and avail myself of the non-pharm options, unfortunately the system isn’t set up for that. I may get all drugs covered on my health insurance but when it comes to things like CBT or MBCT (the two best treatments for depression) I either have to pay exorbitant fees or wait God knows how long on a waiting list. Even then, it’s dependent on me being in a position to take the necessary time. So kudos to you for putting together such a comprehensive and holistic treatment plan for Ryan. And let me tell you, there is a lot to be said for the kind of personal empowerment that comes from managing mental illness without drugs, my hat goes off to you.
July 12, 2012 at 9:55 am
I think people that put their kids on medication and have good results are naturally going to think that’s the best way to handle ADHD because that’s their experience. Until more parents or organizations come up with articles explaining the other side to medication not much will change unfortunately. You are a good advocate for Ryan and are doing the best for his particular issues he’s dealing with.
July 12, 2012 at 10:33 am
adhd can totally be treated with behavioral modification therapy. that being said, would i have the patience and diligence to treat it this way myself? probably not. i take adhd meds myself and they definitely help a lot, but it takes a special kind of person (and mom) to have the wherewithal to do it unmedicated, and that special person is you. you should be quite proud of yourself.
July 12, 2012 at 7:57 pm
I for one was SO glad that you guys took the leap to try going without seizure drugs (wasn’t going to suggest it because I know very little about epilepsy, but that’s where logic kept bringing me in this situation)…therefore it’s probably not surprising that I think it’s prudent to try ADHD without meds in this case
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I kind of wish everyone was forced to get to the best possible med-free baseline and *then* consider drugs. But often looking at diet, exercise and catered learning methods are skipped over and people go straight to the meds. Or they do meds in lieu of figuring out the other three components. It seems like that even for kids for which the medications are a miracle it would be best to have all the other aspects in line…in preparation for when they stop taking their meds and for general good habits.
I think it’s terrific that you’ve spent so much time working towards a solution that works in your case — might not be an easy road, but sometimes that makes the final destination even more glorious.