Great news, ever since starting the Depakote last Thursday Cameran has become seizure free. It will be a week Tomorrow since she has had one. We hope and pray that they are outta here.
She is on 250mg right now they still are wanting us to raise it to 500mg. Not sure why, guess they want to make sure they don't come back! Which I don't want that either but I also don't want her over medicated again. We don't want to relive that whole episode back in October 06' of Ataxia!
If things stay stable they have talked about either re-moving the Keppra or the diet. We will see when the date approaches but that is 3-6 months away. We just need Cameran to stay stable for a while. We know for a fact that the Klonopin is working we learned that earlier this year when they tried to remove it and the seizures would not come back down they climbed up into the 70's. The Keppra will probably be my first choice as well as theirs. Just because they aren't to sure what the diet is doing. Its a possibility that the Keto diet got rid of her IS and their is a possibility that its not doing anything. Hard to tell, since she went S/F when we started it for 3 days and then the new kind approached. And now they are all gone but only because we added the Depakote! Hard choices but we have time to think about it.
Right now she is still scheduled for another EEG in May so we will see what is read.
3 comments:
Here's my unsolicited advice:
They tried to up Michaela's Tegretol even though she was S/F because they said that she wasn't at "a therapeutic dose." Well, I simply told them that we weren't going any higher unless the seizures did! For her, it WAS a therapeutic dose, and kept the seizures at bay. So why go up? Made no sense. And she did well at that dose until she grew a bit, and then it needed to be upped. Which made sense, so we did.
So what I'm trying to say, is: Unless they have a really decent reason for upping a dose that works, I would encourage you to question it. What is "normal" for other children, may be toxic to Cameran!
"If it ain't broke, don't fix it!"
Like I said, this was un-asked-for advice, but I just wanted to let you know that you CAN decide to NOT up a dosage you feel is working. We've done it, and it's your right as the one who knows her best.
Either way, so GLAD to hear about her having such an awesome week!
Just checking in...hope things are still going well. We are headed to NYC tomorrow for Austin ERG. Wish us luck...I have strong reservations...read my blog to understand why. I'll let you know how we make out.
Kelly- glad to see you commented. You haven't been blogging...hope all is well with your family.
Jen
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