So, we had a great meeting with our new neurologist last Thursday. We will miss Dr. Graf dearly, but like our new guy just fine. We did find out a few things we didn't know...her new medication that seems to work so well for her is a short-term medication. That is to say that her body develops a tolerance for it (different than most other anti-convulsants) and therefore, we cannot use it for extended periods of time because every few months she will need a higher dose. So, we decided, with the dr. and nutritionists that after she fully recovers from the heart surgery that we will put her on the ketogenic diet. We are hopeful, but guarded--we are not expecting a miracle, but if we get one, that would be great. Ideally the new diet would either seriously decrease or stop the seizures and we can take away at least two of her current seizure meds. Trying the diet is a no-lose situation. It won't make her worse and if it doesn't work we'll put her back on her meds and a regular diet.
By the way, we also got a call last week from MO HEalth Net (medicaid) and apparently Olivia does have secondary insurance with them after all...even though we never got a letter. Go figure. Great news, though.
If it could be possible, the teething has gotten worse. There are six teeth causing my girl so much trouble! She doesn't always, or even usually, but this afternoon was filled with crying and rocking and hugging. Really she yells more than cries, which is sad, but also kind of funny in a strange way. No, I am not sick. I don't like seeing her in pain, but sometimes its like she doesn't even remember why she is still screaming. The girl does know how to pitch a fit. That is for sure.
Thanks for keeping us up to date on what's happening. I feel better just knowing what is going on -- Love you, Jane
ReplyDeletethat is exciting. i'm all for diet changes as opposed to more meds...just the hippie in me. i am praying that it works!
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