>> Monday, December 10, 2012
The new plan is both exciting and scary as hell.
We know that the two AED's (Anti Epilepsy Drugs) that help our little prince the most, also make his Folate condition worse. At least in theory. Knowing this, we have no choice but to take him off them and hope for the best. Only then can we see if the Leucovorin is being successful, because right now, the medications could be negating the treatment. In essence, we are taking him back to ground zero. Starting at scratch. Zero.
So, the plan:
1. Have an EEG.
2. Reduce the Phenytoin by .25ml a dose daily (that's a little tricky, I will give him 1.25, 1.5 and 1.5 the first day, then I will give him 1.25, 1.25 and 1.5 the second day and so on until we are down to 1ml 3x daily)
3. Have another EEG when new target is reached and determine if we will continue or modify the wean.
It should take a few weeks but we have to do it slowly for a few reasons. First, we don't want withdrawals. Second, we don't want to shock his system into seizing. Third, we don't want to send him into Status, we want to give him enough time to process the changes.
Glenn and I agreed that the EEG was key in determining whether or not we were harming or helping, and the Doc agreed. Hooray!
Arranging the EEG immediately. Wahoo.
We are NOT treating the Auto Antibody at the moment. I am very uncomfortable about this but we have to to one thing at a time. Change one variable and his folate issues are fairly complex and it is not known if the meds are making it worse, or creating it. Doc said:
No one in Utah will treat him for this. I guarantee it.
It's nothing I haven't already heard, but it is still shocking. NO ONE CAN or NO ONE WILL? It unsettles me. There are other children in the State with this condition, albeit, not as bad as Bug has it, but don't they deserve treatment as well? And who will champion that? Why isn't there ANY Doctor in this state that wants to help these children?
With no recourse, we help him ourselves, as best we can and then we take him to Arkansas in July.