Talked to Neuro - Have a Plan

I am happy to report that I talked to Dr. Korol yesterday and we now have a mutually agreed upon go forward plan.

We have decided to leave his Depakote alone and increase his Zonegran to 125mg twice a day for one week and then increase again to 150mg twice a day (he is currently at 100mg twice a day).  Dr. Korol first prescribed Zonegran specifically for his myo seizures and since those are the ones that are still persisting (and his Zonegran levels are low) she wants to try to increase it.  Since I heard that Zonegran actually works well with the diet and pushes the child further into ketosis I was okay with this. 

We also talked about what to do with Depakote.  Dr. Korol said if Joshua's head drop seizures stay at bay for the next few weeks she would be okay with starting to wean him off Depakote.  YEAH!!!!  I'll be extremely nervous about it, but very excited at the same time.  So, now we just have to hope and pray that his drop seizures stay controlled so we can start weaning Depakote sometime in July.  It would be fantastic if Joshua could be off Depakote (and down to 2 drugs) by the time he went back to school in the fall.  The wean will be slow as you can't just stop the medicine, but it will be awesome at the end of the wean.  Of course if he starts to have head drop seizures when we take the Depakote away then we will need to increase his dosage back up, but let's not dwell on that possibility.  We should know within a few weeks if increasing the Zonegran is going to help with his sleeping myos. 

When Joshua goes seizure free (she said "if", but I'm saying "when") then we will talk about when to try to wean his other meds and how long he will need to be seizure free before we do that.  I don't want to get ahead of myself, but that possibility hanging out there gives me hope.  Dr. Korol kindly reminded me that a lot of kids still require being on 1 med even while on the diet and my response was that Joshua was going to be the exception to that rule.  :-) 

We increased his Zonegran today so we will see within the next few days to a week if he has any side affects from the increase.  We typically see him being more tired for a few when we increase his meds until he gets used to the new dosage.  His last day of school is next Monday so it should not affect him at school, even if it does make him more tired.

Michelle