Sorry so long since an update. Honestly, I haven't really been in the blogging mood. The new pressure of the vigabatrin trial has been seriously taking a toll on me.
I can't say one way or another if anything is happening yet. One day spasms are low and he's in a great mood...the next is the complete opposite.
It's been 6 days so far. Nothing to celebrate yet...I'm trying to be patient and remember that 3 days, 5 days, and even 6 days is waaaay to soon to start making assumptions. But, there's still a part of me that's disappointed that it's not making any difference yet. I wanted so bad for him to be one of the ones it helped in 2 days. If anything, after 2 days they were worse...then better by day 4. Now, today, they're worse than they've been since we started. 67 in 2 1/2 hours. That's with a baaad cluster of 55 though.
So, it's too soon to report any major news. Every day is different. That's why I didn't update when he only had 20 one day (which for some kids that would be a bad day...for him it's pretty good).
We are trying to take it one day at a time, and this day stinks.
Maybe tomorrow.
1 comment:
DON'T lose faith or give up yet. Though some kids respond quickly and at low doses, there was one little boy on the IS group, younger than Austin, who needed 2000mg a day. A LOT for a little boy! Here is his blog
http://www.connorsbattle.blogspot.com/ or just send a message to the IS board titled Tina- Connor's mom.
GOOD LUCK!
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