The Medication Roller Coaster

As a therapist I have a strong belief that children, and anyone for that matter, should not be medicated until the issues for which you want to seek out medication interfere with your day to day life. This said, when David was about 4, my husband and I were going out of our minds trying to figure out how to deal with him. He was constantly everywhere, he couldn't sit still, struggled to listen to basic directions. So we as parents were faced with the "do we medicate" question. My best friend gave me the best answer, "are we making are life easier, or his?" We took that to heart and while at the time I felt the answer was both. I mean seriously I was ready to kill him some days and if meds made my life easier it would naturally extend his life. But in reality, it wasn't about him. He struggled at preschool, but he was able to make it through the day. He had few friends, but they had been the same few friends from some time. Overall, he was fine.

When he was five and started kindergarten, we reevaluated. Two weeks into school we got a phone call saying that they wanted to call an intervention team together for David because of his disruptive behavior in the day. At that point, we realized that his behavior was effecting his ability to learn and to make friends so we started the medication roller coaster.

During the past few years there have been a few changes to David's medication. He has mainly been on a stimulant for his ADHD. And while we have had to go through a few we have had good success in their ability to control David's impulsiveness. Last year we went through a major upheaval to his medication after adding Zoloft under his previous psychiatrist's recommendation. A medication that due to his past history of seizure he should have never been on. He ended up collapsing of exhaustion at school (He was only on the medication for 2 weeks). We spent four months trying to figure out what what wrong with our child. We saw every doctor under the sun; sleep specialists, neurologists, allergists, etc. And what we found was that he 1) has a huge sensitivity to medication, 2) has a sleep disorder 3) and most importantly he has never been the same.

This fall David became very violent with himself. While he has always head banged, he became worse and he began scratching himself to the point of drawing blood. His tantrums also became violent. We had to do something and we considered hospitalizing him because nothing we did was keeping him safe. Ultimately we decided to change his medication, or more correctly add a medication. We also began our journey towards our diagnosis on spectrum. And most importantly we found a psychiatrist who is invested in our son, returns phone calls when we are in crisis, and has a better handle on spectrum diagnoses.

In December when we finally got to meet with our new psychiatrist he started David on a new medication (actually added) with the hopes of getting rid of two of his other medications. David initially did great! We were seeing a whole new kid and then he got Steven-Johnsons syndrome (WARNING... if you decided to Google this be ready to see some graphic and disturbing pictures). So naturally his medication needed to be stopped immediately. After two weeks off medication (oh the joy!) we started a similar medication to the one he was allergic to. We have seen some improvement but have to change from the regular form to the extended release due to sleep issues. Finally after 3 months we are starting to see a regular improvement. So what do we do, we change it up again. GRRRR! In order to help with the sleep issues we are in the process of changing the timing of the dose so it is currenly split up morning and night, trying to see if moving it to the morning helps some of the sleep issues. We shall see.

I have always believed in better living through chemistry and I know with David we have seen the light we just have to ride the roller coaster until we find it again!