I don't have a whole lot to write about today regarding Bennett. Ive been so completely drained of late thinking, worrying, fretting, watching, hoping, wishing, trying to make sure I eat which I can't seem to do lately, etc. and I don't want to just be a broken record today so I will give a brief update for those that need the info and that'll be it for now.
March 5th, a Thursday, he started ACTH to attempt to control his seizures. During the first week of the two injections a day his seizures lessened a little. Instead of 3-4 clusters of 24-32 seizures per day, it shortened to about 1-2 clusters of as little as 8 as many as 20 seizures per day. After that first week, he went down to half the dose, and went the seizure activity increased again. That was last Friday when the half-dose started.
So as of yesterday, the neurologist has decided to go back to the stronger dose, twice a day, and see where that takes us. More of the super-expensive drug ACTH is on its way and we'll start administering the new dosage (same as week 1 though a fraction higher than that) as soon as it gets here, which we believe to be today.
So that's the news. Check out this photo, taken on Monday. Hardly looks like a severely ill child at all does he?
Therein lies just some of the Madness of all of this. I'm trying to get a short video using my camera (since I can't figure out how to convert a short vid off of any of my home DVD's from my camcorder) of the episodes to show the difference, though not sure I will show it or not...might be good just because any and all info on the net about this stuff is good...might make it easier for the next parent to find information when their time comes.
Might be good to see the contrast for people that might not understand. Though even seeing how he behaves during a seizure cluster won't show you why I can't eat...it isn't necessarily the episodes themselves, though my heart breaks and I weep during every one I see...it's the damage that is being done to his life and his brain and his future and his hopes for a normal life that I see played out before my eyes every day without having any power to influence the outcome.
That's the latest, we'll see how it goes.