alex

Where to begin? Alex has been having a horrible time lately. He has barely eaten for the past couple weeks. He was almost to 80lbs (and actually starting to show some love handles) when all of a sudden he just stopped eating. He's now down 4-5lbs and is starting to not drink much either. His behavior has been horrid...he's starting to bite himself, use his fingernails to scratch his face and pull on his hair. Today we gave his hair a trim with the clippers to take care of that last one. His nails are trimmed, but he's still managing to gouge himself. It's so tiring.

Usually his favorite thing is to go out and about with our respite provider, J. She takes him in his stroller all over the city, to her house, the grocery store, post office, playground, etc. They're gone for hours, and he usually just has a blast. Today he was happy for the first hour or so, and then it went downhill fast. Nothing she did helped him. He just cried and tried to hit, didn't want to be in his stroller, didn't want to walk beside the stroller, didn't want to eat. I'm not sure how she did it (it was a 9-5 shift today, and another one scheduled for tomorrow). I sure hope she doesn't get burnt out...she's been a lifesaver for us.

The only thing that's changed recently is we increased his Trileptal a couple weeks ago. So tonight, we decided to drop him back down to the dose he'd been getting and increase his Risperdal a little bit. Hopefully that works. Trileptal is usually a very well tolerated medicine, however the most common side effect is headaches. Next, dizziness and nausea. He once went toxic on Topomax when he was little...stopped eating, then finally stopped drinking. This reminds me of that. He was also totally sensitive to the quietest of sounds at that time, and would jump and cringe at something as small as papers shuffling. I wonder if something like that is going on...and clawing at his head is him trying to get those sounds away. Or, he simply could have a massive headache. Or, it could just be TSC/Autism related behavior issues.

I just want my happy boy back. Looking back at his videos of him as a baby/toddler is heart wrenching. To see him laughing and playing...not needing to be wrapped up, not needing a helmet, not trying to always hurt himself....why can't we get back to that?? How can we get back to that??