I don't want to write about this.
I don't want to think about it.
Yet I feel I need to.
Full disclosure though: It's not as bad as I thought it would be.
It isn't good though either.
Ayden was on 20mg of the study drug, taken in two doses of 10mg each. On June 9 we began titration and he dropped to 10mg of the study drug taken in 5mg doses twice a day. At that time, we also added in 20mg of baclofen taken in 10mg doses twice per day.
Day 1 was really bad. We had our first major meltdown in the morning around one hour post-dosing. Followed by bathroom accidents, frustration, more meltdowns, and a very sleepy boy. It was not anything unexpected, but pretty hard to take in. (Jump over to http://stx209stories.com/stx209/ayden-abouelseoud-holt-mi-update-1/ to read the full story)
Day 2 followed much of the same pattern. He woke up extremely hyper, but more of a borderline sensory overload. It was his last full day of school, and school noted this was the case as well. He had a small meltdown in the morning, around one hour post dosing just as the previous day, but by the afternoon was a mess. This is a small portion of the email from his teacher:
The refusals/meltdowns then started after special. They lasted the rest of the day. He went from crying, to throwing the materials, to hitting. He just seemed overwhelmed. He was very oral, chewing on everything. I did have to set a timer and have him sit at the table a couple of times because he continued to hit/push and really needed a break.
I could share each day, but it is much of the same. We're seeing a pattern of a small, 20-40 minute morning meltdown that happen around one hour post dosing. We are then seeing a meltdown in the afternoon, also around an hour post-dosing that lasts on average 2-3 hours. Lots of stim behaviors returning and anxiety. He's fighting it, but it is there. This is from day 3, and just a short clip of our entire afternoon. It's difficult to see him like this.
The most heartbreaking thing for me to watch is honestly how much more difficult it is for him to communicate right now. He wants to - I can SEE him trying. He just physically cannot do it. And then he becomes frustrated, so frustrated in fact that he can't even revert to showing me instead of using his words. I don't think his language is disappearing even though we are hearing it less.
The good thing is that his humor that has emerged over the past few months is not going away. He's still trying to eat our brains and scare us with yelling "BOO". I don't think it is as often, but he's filling a lot more of his time with stimming, and escaping to a quiet place (his iPad, movies, and the pool).
As I said, it isn't as bad as I thought. I think the baclofen is making a difference. I've been in contact with Ayden's doctor and we've made some slight changes already so I'm hoping those will help even more. I think she has a good idea for next steps for us as well. We're just in a waiting period now. Saturday is our last day of arbaclofen. A week from today I will be mailing back 3.5 boxes of medication. We'll have a few weeks after that to see where he levels out at (it took about 3 weeks on arbaclofen from dosing changes) and then we'll go from there.
Look for more updates as we progress.