Meds or no meds Part 2: change is always hard…

Colin is 100% a creature of habit and routine. He craves it; needs it, really. If his routine (or what he EXPECTS to be his routine) is changed in any way, a meltdown can, and often does, occur. Something as simple as taking a different route home than he’s used to can cause heightened anxiety, and a load of questions. 

Over the last 4 months or so, Sara and I have noticed that Colin’s meds were not having the same effect they once were. When we first went to our developmental pediatrician, he gave Colin a “booster” dose of Ritalin in the afternoon to help with the “crash” he was having after school, plus he put him on, Abilify (as a mood stabilizer). For the first year or so, it worked wonderfully. He was having fewer meltdowns, he was nicer to his brothers (most of the time), and he was doing well in school.

At the beginning of this year, though, things started going down hill. We went back to our pediatrician, and he upped the dosage of Abilify. That did not help. In fact, it made things much worse. He would cry and meltdown at the drop of a hat, and was mean and violent more and more towards his brothers. We stopped the Abilify within about 2 days.

We have gone through a couple different combinations of meds, including trying Risperidone, but nothing has really worked so far. Our pediatrician recommended we try a psychiatrist that specializes in kids like Colin, so we started seeing him about a month ago.

He put Colin on a low dose of Clonidine to help him sleep, and that has helped him some. He at least goes to sleep at a decent hour, whereas before he would be up until 10 or 11 pm, then he would wake up any time between 4:30 and 6:00 am. I have always believed that Colin’s lack of sleep is a BIG reason for a lot of his behavioral issues. Even as an infant, Colin never napped.

I believe if we could figure out a way for him to sleep longer, a lot of his behavior problems would at least get better, if not work themselves out. Colin, on the other hand, has different ideas. Sara and I basically thank our lucky stars if he sleeps past 5:45 or 6 am, which can be  especially hard on Sara.

She is with Colin, without help from me, during his most unmedicated times of the day because I work nights (10 pm to 6:30 am). Trying to get herself up and ready for work in the morning, while also making our three boys breakfast and getting them ready for school, all the while having to keep Colin in line, is probably too much to ask of one person. But, she does the very best she can, and fights through the challenges like a champ.

We are hoping that putting Colin on something stronger (and, hopefully, longer lasting) will help put an end to the roller coaster of hyperactivity he goes through on a daily basis. To that end, we have started him on Adderall, with an eye towards moving him to the extended release version once we get the dosage worked out. 

This presents a few challenges. First of all, like I said before, Colin does not deal well with change. Seeing the new pill brought up a bit of anxiety, plus a whole host of questions (What is this pill for? Why is it blue? What happened to my circle pill (that’s what he called one of this other pills)?  Etc…

Secondly, since it is a new med, we have to start on a very low dose and work our way up to the optimal dose. This causes problems dealing with his behaviors both at home and at school. We also have to file paperwork with the school so that they can give him his afternoon dose. I have yet to do that since we are not sure we will stick with this medication, nor are we sure we will even need the school to give him his afternoon dose once all is said and done.

So, for now, I go to the school every day at noon and give him his afternoon dose myself. The one benefit of that is I get a mid-day report on how his behavior is that day. It is not, however, optimal conditions for me resting during the day.

But these are the sacrifices we make for our children. Sara and I just want what’s best for Colin, and we are still not sure if Adderall is going to work for him or us. The first few days were not good, as his behavior at school was terrible (thank goodness we have some wonderful teachers and administrators here). Thursday and Friday were better, but still far from where we want to be.

This weekend, we upped his dosage once more, landing on 20mg/twice a day. This is roughly half of the total dosage of Ritalin he took for the entire day, but spaced out in two doses. His behavior was actually pretty well regulated today. When I left for work at 9:15 pm, however, he was still having trouble going to sleep (insomnia can be a side effect of Adderall). Plus, he was up by 4am Sunday morning. I KNOW that will not work for us in the long run. We’ll just have to see how it goes…

to be continued…

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