Tuesday, November 13, 2012

STX209 - Update 2

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We are now two full weeks into the trial and have completed Visit 1, 2, and 3 out of 7 total.  Our second visit (technically Visit 3 of the study because Visit 1 and Visit 2 were combined for us) took place last Friday.

We were informed at that visit that if we are on a higher does, we haven't yet reached it.  She didn't explain exactly, but said something to the effect of we would be at the steady dosing (not being tiered up) at the 4th visit.  That is of course assuming we are not on the placebo and we are on a high dose.  The only reason this information helps is for watching for a dose that is too high for Ayden.  Some kids when they get on too high of a dose actually have the opposite behavioral issues occur instead of the once we are looking for.

Changes we have noticed, well, they are minor and could all be attributed to a really good day for Ayden (see story below) or just normal development.  Here is what we're noticing...stressing that these could all be due to developing and work at school.
-- Less spinning
-- More purposeful play with toys
-- Requesting to do non-preferred activities (like coloring)
-- Sitting still for more than 5 minutes when not doing preferred activities
-- Less overall anxiety

So, that is a short update on changes...but I do want to share a little story about this weekend.  I know for someone stumbling upon this blog that hasn't met Ayden and doesn't know us this won't mean a lot...but for those that do, and that deal with a fraggle with anxiety issues - this is kind of a big deal.

On Friday, we took a full day trip to and from Chicago for Ayden's visit.  That's 8 hours total in the car.  He had really high anxiety that day (not unexpected), but it was somewhat worse than normal.  The blood draw wasn't pleasant, but it went MUCH better than our previous visit.  It was just a lot of whining and fussing all day.  Recovery from a day like that usually takes a day or two for him, so I expected us to be back at 'normal' anxiety levels by Sunday.  Of course, we have always tried to push a little bit though, so we made plans to attempt a birthday party that weekend.  At an inflatable bouncy house.  That was loud.  And chaotic.   Oh, and with people Ayden had never met before.  I'm typing this and wondering what in the world we were thinking because those things are ALL triggers for his anxiety and it was the morning after our Chicago trip.

You know what though...Ayden did amazing.  Super amazing.  We walked into a large, gym-like room that was loud with kids running everywhere and screaming and he didn't even hesitate, not for one second.  He was pushing Emma's stroller and I can honestly say I don't even think he looked back at me for a visual "You're fine" like he usually does.    Once we got his shoes off, he started to just run off to play.  I had to make him wait so we could see where he was going.  He had SO much fun.   We had minor problems when the birthday boy was opening gifts, but they were just that - minor.  Mostly he was just asking to eat the pizza and cake sitting on the table and we were telling him to wait.  But it was  two of his favorite foods and he was just STARING at them - can't blame a kid for that, really!  He barely even reacted to everyone singing "Happy Birthday".   It was just a really great experience.  Whether we are actually on STX209 or we're on the placebo and seeing some new developmental changes - I honestly do not care.  I just hope we see MORE of these amazing days to come!


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