>> Tuesday, February 5, 2013
We have been lowering Bug's Phenytoin (Dilantin) for the last few months. He is doing remarkably well, seizure-wise, driving me insane behavior-wise.
For the last 10 days, since we took him WAAAY down, he has been averaging 1-2 seizures a day. Not bad, not bad at all. Yesterday he had 3 but today, he is back to only one with less than a half hour to medication. Going well, I would say. I WOULD say except...
He is back to hyper as hell. And I mean hyper as hell. Although, he is sleeping really well. The Clonazepam is still making him clumsy and the lessening of the Phenytoin is making him happy, and verbal. Somewhat verbal. Says Mom at least a few times a week but will NOT mimic. Clumsy and happy is just a disaster. I have been injured everyday for the last week because of his hyperactivity and me having to corral it. Currently, I am relieved he didn't break my toe or crack Ava's head open because he keeps forgetting she is around while spinning his toys.
But, his eye contact is longer and better than it has been in years. He seems more present and will OCCASIONALLY follow directions. Sadly, those occasions seem to be once a month. But, oh well, it's a start.
The truly tough part is the eating habits have gotten worse. Which is messy and gross. In this, we are back to square one. Only Ava is messier, and that's not by much. The quantity that she produces is much smaller. Even the Roomba can't keep up. Sigh.
What we also learned is that magic year, that 'let's make it a year and we should see THE difference' is actually 3 years. Yep, it can take, and usually does take, up to 3 years to gain back what was lost, if possible. Finding that out was almost as heart wrenching as finding out that no Doctor in Utah will treat him.
That was the big one. The really big one. I mean, how in the living hell can they make him worse than 4 status in 18 months? He is strong and just about the healthiest of us all. Why then, will they not suppress his Autoantibody? This kid has been ignored. Again. We are so close to being able to really help him and then we hear:
We want to try dairy free and Leucovorin for awhile.
Hello? Did I not tell you he has been diary free and on Leucovorin for 8 months? Let's move passed this. And I haven't heard back.
I heard a commercial on KSL radio that set me off...O-F-F, I say. They said something to the effect: We are telling your stories, your Mother, Father, your sons and your daughters stories. Uh...no you aren't. Anytime we say Epilepsy to them they shudder and tell us it's not 'human interest' enough. Direct quote: "Not enough people are interested". It seems that way doesn't it? Not even the Doctors give a crap.
Bitter? You betcha!