This post is about our few months of finding the right ADHD medication for our son. To see how we found out he had ADHD and our journey before that, check out my previous blog posts.
In December of 2018, he was diagnosed with severe combined ADHD. With him only being 4, they did not want to start him on any medication unless it was severe enough to be affecting his life and there was nothing else that would help. Then they would try a non stimulant medication before moving to a stimulant medication. We started behavior therapy with a psychologist twice a week to work on transitions and behavior strategies. She gave us some things to work on at home.
We started doing joint compressions and brushing prior to school and when he was overstimulated. We will have a post on that later in the year. We integrated heavy work, crashing time, spinning time, and yoga into our morning routines before school. We tried having his grandfather bring him to school rather than going to morning care. We thought that was a trigger. He would bring him right before school started so the hallway waiting time would not be a trigger either.
It was just getting worse and the calls from the school were getting more frequent. I was not getting them several times a week. I spoke with the psychiatrist, who put him on a non stimulant medication, Intuniv. This was a very hard decision for both of us. He was so young and to start him on medication was and is still scary. It put my anxiety into overdrive thinking about what could happen with it and the what ifs. I have seen first hand when children like him suffer in school because they do not have the proper treatment they need in order to be successful and I was determined that he would not be that child. Of course every family needs to do what is best for their family and children, but I could not stand to see him struggle so much no matter what we did and neither could my husband. His aggression was starting to increase as the time passed by so we had to do something.
Anyone who thinks that medication its he easy way out is completely wrong. It is not the mentality of giving your child a pill and its all better. Finding the right medication is a challenge and the side effects are unpredictable. So back to the Intuniv. We tried it for two days, but he could not swallow it. It was way too large for him.
I called the doctor to see what we could do, and prescribed a patch of clonidine for him to wear. This was great! We had our son back and he was doing so much better in school. He was getting good reports and the teacher was sending home positive notes. The only problem was that he was now having trouble sleeping. He always struggled falling asleep since he was an infant. Once he was asleep, he was fine usually. Now on this medicine he would wake halfway through the night and would not be able to go back to sleep. I was exhausted. It was so frustrating that we found something that helps him "feel better" as he described, but it came with bad side effects like losing sleep. I just didn't know what to do.
His behavior was great for a few months, but around May, he started to get additional side effects of the medication. He was punching and hitting. He was angry. He was having outbursts and nightmares. He was just not himself at all. He had hit and been aggressive with arguing in the past, but not to this level. I was getting calls from the teacher or principal DAILY. It was always around the same time. I would be at recess and the phone would ring. The school name would pop up and my heart would sink. What happened now? What am I supposed to do? Where am I failing as a parent? I am such a horrible mother. My anxiety would shoot up every day around that time and I spent so many lunches crying because I did not know what what to do. In the end he ended up getting 8 referrals that year.
Around mid May I called the doctor to get him off of the medication. He told me to take him off right away. According to my research, it said that we should never stop the medication cold turkey or there could be serious side effects or withdrawal could happen. I could not get ahold of the doctor and received no call backs for several days. I took him off the of the medication according to what he said and the withdrawal started that night.
He did not sleep for two days straight. His energy was turned up to the max, he was refusing to eat and drink most of the time, he was running around the house in circles screaming constantly. There were many other side effects, but these were the main ones. After he was up for two days straight, I took him to the hospital emergency room. I still could not get ahold of his doctor. He was getting dehydrated and we were absolutely exhausted. The emergency room doctor told us that they could not do anything to help. They tried to get ahold of the doctor, but could not get ahold of him either. This went on for another day. I could get him to eat minimal things and drink a few things, but he soon stopped all together. I finally got ahold of the doctor and they told us to get him to the emergency room. Again we did, but again they could not get ahold of the doctor and could not do anything. They did get him to eat something before we left though. We were at a loss and just had to wait it out. He was out of school for over a week with the withdrawal symptoms. He finally went back to school to finish out the school year.
We immediately called a pediatric psychiatrist and made an appointment to switch doctors. She has been amazing ever since. Once we got him off of the clonidine and he took a little break from medication, we were able to transition him to Adderall IR. This medication has been a godsend!! He was acting like my son again! He was focused, he was kind, he was keeping his hands and feet to himself, he was working hard to follow directions, and he was sleeping again!
We have to keep an eye on his weight because it is a stimulant, but he is eating fine and gaining weight like he should be. After his surgery in 2019 and his three week liquid diet caused him to lose weight so we had to catch up with what was lost then. When he starts to go back into how he was pre medication, then I know it is time to call the doctor for a dose change. His psychiatrist is very helpful, knows how to give him what he needs, and I can reach her when I need it. She always calls back the same day. Even though it took us a month or two to get into see her originally, it was worth the wait.
If you feel that your child has ADHD, please contact your child's pediatrician. Medication is not the only treatment that is available for your child. We found that with medication, therapy, and educational support through the ESE program was the most successful combination for our son. Check out my next blog about fighting for an updated IEP for him to get that educational support.
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