The Beginning of What Was to Come

December 04, 2013


The years went by and Christian went to kindergarten. He was still delayed in everything he did  He was fully potty-trained before going into school, but it definitely took a lot longer than I wanted. He was almost 6 years old when he finally achieved being fully potty trained with minor accidents. The teacher noticed him being fidgety, not focused, and hyper.  She told me something I already knew: she believed my son was expressing signs of ADHD and I should take him to the doctor. So I took him to the doctor and explained his symptoms, what the school is seeing, etc.  I didn’t want my kid on medication, but I knew he needed help, and I needed help, too. The doctor said that kids with autism have self-injury habits and that Risperdal is supposed to help with that. At that time, I really didn’t look into anything. I believed what the doctor was telling me would help my son, so I agreed to put him on it. And for the hyper activity and the lack of focus, she put him on a non-stimulant. We tried Strattera first. We did this for a few months. The Risperdal was working for the aggressiveness and self-injury, but the Strattera was not working for attention, hyperactivity and focus.

So back to the doctor we went. Dosages were increased, but when that didn’t work, his medication was changed to a stimulant drug. Adderall came first, but didn’t work at all. Plus, he wasn’t sleeping and eating like he had before. Next came the Daytrana patch. That seemed to work for a while. Then the doctor ordered an EKG and ran routine blood work because my son was on medication. The blood work came out fine and the EKG was fine (we would learn later that it was NOT!).

After starting these drugs, my son’s sleep was messed up and his appetite decreased. He wasn’t tired and he wouldn’t go to bed until close to 11 p.m. or midnight. He wasn’t eating as much – maybe twice per day and he was being picky. I told the doctor about this and she said to try melatonin, 3 mg. right before bed. At this point, I was crushing his meds and mixing it in juice or water or food.  By 6 ½ yrs old (six months into crushing meds), I taught my son how to swallow pills. It was a task, but he did it. The melatonin given 45 minutes before bed worked like a charm, but actually too well because by bedtime he was pretty tired. I really didn’t look too far into melatonin. I wish it all clicked back then, but it didn’t.

After months of rotating the Daytrana patch from one side to the other, it just wasn’t agreeing with my son’s skin. He kept getting rashes. Additionally, because of his hand mirroring, my son couldn’t undo his button and zipper on his pants. He just pulled his pants up and down, causing the patch to fall off.  If it fell off during the day, he would get very hyper because he was going through withdrawal, but I didn’t know this back then. I still don’t understand all this neurological stuff and why he didn’t outgrow this as a baby, and I still don’t get why he has so much trouble with his hands!

So we changed meds again and the doctor put him on Vyvanse, which worked at first, and then it didn’t. We stuck with it and increased the dosage, and again. Over the years, we got to the maximum dose on the medication. I was tired of changing meds at this point. We were still experiencing some overall symptoms, but we left it as it was. We also saw the Risperdal stop working, increased the dosage, but stayed with a low dose. So after getting on the highest dose of the stimulant drug you can possibly go, a non-stimulant drug was added, Intuniv. Three medications! Through the final years, we were at 72 mg. of Vyvanse, 3 mg. of Intuniv, and Risperdal was 1 mg. in the morning and 1 mg. at night.