On Friday we will make our final trip to Chicago for the double-blind portion of the STX 209 trial. In the time since I posted my last update, things went from mildly frustrating to pulling out my hair frustrating. The whole thing culminated last Friday with me taking time to go into school and observe Ayden to see if we could brainstorm some ideas as to how to deal with everything. (bear with me while I try to organize what led up to this)
Over the maintenance portion of the trial we slowly saw all the good things we had been seeing with Ayden all but disappear. We had seen gains in focus, socialization, anxiety, speech, less stim behaviors, and small things like starting to use toys correctly. When we went to our last appointment and looked back to the differences - we saw drastic decreases in every single area that had made gains. I want to reiterate that these decreases were seen during the maintenance phase.
I briefly mentioned the aggression issues we started seeing in the maintenance portion of the trial as well. While the issues were minor things such as hitting himself, throwing himself on the ground, or slamming his head into a wall (which sounds worse than it is); every so often we would see a hitting incident occur towards another individual. We've dealt with hitting before...but it was different. Ayden used to hit Issac when he was younger. I think the worst of hit was around 3.5-4 years old where he would actually stop doing an activity to walk over and hit his brother. He would also swat at me on and off, but these incidents were isolated to times where he was already hyper-aroused and I was attempting to help him. Those types of things involve bear hugs, deep pressure and just generally actions that require me to be right in his personal space. The thing about those prior instances is they were always toward an immediate family member and we had not seen them for quite some time. I want to give background on this, because while on the maintenance portion we not only saw the emergence of hitting as I described above, but also had an incident at school where he actually hit his para-educator.
So now we are on the next portion of the trial, titrating down from the medication (or placebo). We started this process almost two weeks ago and since then, behaviorally, Ayden has almost been unbearable. Just a few days in to the new packs we noticed a decrease in aggression. While it was less in number though, it was worse in degree when it did happen. As the first pack progressed, we have seen Ayden not just losing the abilities he achieved over the course of the trial, but also a regression of some behaviors back to things we haven't seen in a year or two. Re-emergence of stim behaviors and anxiety especially are bad. Those two things lead to a lot less socialization as well. As one can imagine, these affects are seen the worst at school. He's having a difficult time focusing ,so work is harder which is making more anxiety. He's being made to do things that are difficult which also means more anxiety. Then frustration is piling on top of that - I imagine because he is unable to do things he could do just weeks ago. All these things just lead to one very sad, anxious, over-extended little boy.
As I mentioned above, I went in Friday to observe Ayden during school. I was only there for an hour, but it was much worse than I expected. He basically spent the entire time staring at moving objects hanging from the ceiling (this was during calendar/weather time). As he moved into group work, he refused to do things every time it was requested of him. He would walk around, stare at the ceiling...basically anything to not do what he was told. When he was forced to by hand over hand...he started clearing materials from the desk and attempting to throw them as well. I left after about an hour. I had gone to observe what they were seeing and give some ideas as to how we could help, which I easily had in the time I was there. It was utterly heartbreaking to watch though.
I was home for about an hour when I received a call from school. After I left he had hit his para-educator. Our school district has a very strict policy on hitting. The child is taken to a time-away room and a timer is set. After the timer buzzes, the child is then given a puzzle (or other similar activity) to complete to show they are ready to return to the classroom. When I received the call, he had gone through 4 timers already ending in throwing the timer, throwing the puzzle, throwing himself on the ground...you get the idea. As I was on the phone with his teacher, he finally complied with the puzzle and was returned to the classroom at which point he cleared the gen ed teachers desk and then attempted to hit another child. (which THANKFULLY was blocked by the para-educator).
After all this, I put in a call to the study coordinator. I wanted to be sure they were aware what was happening. I didn't expect him to get worse while going off the medication. We were not told what to expect during the process, which I can only assume is because they want an accurate portrayal from us and not a skewed one by them saying "you may see this". I was very glad I did make that call though. All these things that we are seeing are very typical when kids are taken off the (actual) medication. Especially kids that have been on too high of a dosage. (You may remember, we are fairly certain that Ayden was on too high a dose). It was a relief to hear this was typical, and even moreso to learn that we were probably at the worst of it and should expect the craziness to level out the closer we get to being totally off the medication.
We've had two more days of dosing in since Friday - and have watched Ayden very closely over the weekend. Both Mr Awesome and I feel his focus and anxiety was better than it was the previous week. I am very hopeful this will carry over into school today and we won't have a repeat of Friday.
Our next appointment is this coming Friday at which point we will be enrolling in the open label extension. I want to just end this post by saying that the past few weeks have been difficult, but the small amount of time we saw where we believe Ayden was on a good dosage gives me so much hope for what this will do for him long term. I do not regret being in this trial even for one second despite what we are going through right now. It is a short amount of time in the grand scheme of things. I imagine the next post about STX 209 will be much happier as we will officially and knowingly be on the actual medication.
More to come...
Edit: I forgot to add this little bit...we've also been seeing some sleep issues since starting the titrating down. Ayden will wake 1-2 times per night, but does return to sleep himself. He also fell asleep in school - which is utterly unlike him. I believe the night wakings were also something I noticed while we were building up to the maintenance dosage as well. Not terribly important, but good for others who may be considering the trial.