For Samuel's epilepsy, over the past 6 months, we've tried:
Lamictal (antiseizure med) -- failed
Hyperbaric Oxygen Therapy -- failed
Vitamin & mineral regimen -- failed
Essential Amino Acid regimen -- failed
Herbal supplements -- failed
Crazy Chiropractic Method -- failed
Diet monitoring -- failed
Trileptal (antiseizure medication) -- failed miserably
On to the next thing... Depakote (a fourth antiseizure medication)
Well, despite all the above attempts, Samuel's seizure activity had actually increased from 1 seizure per week to 2-3 seizures per week. Then, we started Trileptal on April 20, and it turned really bad! His seizures increased dramatically, and finally, over the past 4 days, he's had 13 seizures. We must slowly take him back off that medication, which means he's still having too many and he won't be completely off the Trileptal for at least another week. We've been somewhat in crisis mode.
At the same time as we take him off the Trileptal, we are introducing him to yet another new medication, called Depakote. We chose it because we are suspecting he has something called Dravet Syndrome, a genetic type of epilepsy, and Depakote is good for it. (Biggest clue: Lamictal and Trileptal are known to exacerbate Dravet Syndrome.) At this point, it's all a lot of guesswork, and poor Samuel is having to be something of a guinea pig until we figure it all out.
He's still taking Keppra, the first medicine we tried, because it seems to make his seizures less intense when they do occur, but it is not helping with the frequency of the seizures at all. Hence, the experimentation with other medications.
The next step is getting him to an epilepsy clinic like UCLA or Stanford that can offer more than our doctor here in Reno who has all but admitted this is out of his league. We're looking into that now.
Prayers are much-coveted right now! It's been a rough road since we started that Trileptal.
We know, though, that God's grace and strength are sufficient, and we feel Him lifting us up through these tough times.
No comments:
Post a Comment