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.