Over a week ago Izabelle reached the end of her Titration off of Treleptal. At the same time, we removed the stimulant Vyvanse. Although hyper and seemingly out of control at times, it seems we have our Izabelle back personality wise. She is bubbly, creative, loving and a joy to be around!
The downside of the titration though, is that Izabelle is still seizing quite often and for longer durations. One night last week, she had three, large, almost tonic clonic events. Learning has not significantly improved yet, we don't believe. It may take a bit longer to see cognitive gains.
We have an EEG set up for Tuesday in Portland. I am really crossing my fingers for answers.
As I said in a past post:
"Both Dr. Bergin of Boston Children's Hospital and Dr. Morrison of Maine Medical Center concurred that the irregularity and new severity of Izabelle's seizures were due to harmful side effects from the medication Treleptal. Treleptal was the first seizure med that actually seemed to work for Izabelle when she was first diagnosed at age four. The doctors feel that Treleptal has also made Izabelle's EEG's harder to read by creating fragments/irregular electronic discharges that resemble mini-seizures in the background. Basically, Izabelle's little brain has been having irregular activity, 24 hours a day, even when she isn't having a full blown seizure. It is our hope that once off of treleptal, that not only will the ketogenic diet work better, but seizures will become more centralized to one location in Izabelle's brain. Therefore, possibly allowing us the chance to revisit the idea of surgery. The EEG will look more clear and the techs will be able to determine more easily what type(s) of seizures Izabelle is having. The horrible side effects will go away, hopefully allowing Izabelle to develop at a more developmentally appropriate rate."
So... on Tuesday-Wednesday we are hoping that the EEG will tell us weather or not to continue Treleptal. If it is determined that we need to keep her off of Treleptal, we may need to add another med to stabilize her... The diet did work to cut seizure activity in half between May and September but the diet isn't strong enough, it seems, to continue decreasing seizure activity without seizure medication.
We have a follow up with Dr. Morrison on Dec 10th to discuss the results of the EEG.
No comments:
Post a Comment