Sophie is completely weaned off of Vigabatrin. I am so glad she is off that drug. It did absolutely nothing for her seizures (possibly even made them worse). She has been on Zonegran for 3 weeks now and still no improvement with her seizures. So tonight she started Depakote. We are also going to try weaning Topamax again (last time we tried weaning Topamax, her seizures became worse). Currently she is on 150mg of Zonegran, 125mg of Topamax (we are going to wean 25mg every 3 days) and 125mg of Depakote. Like always, I am hoping Depakote is the one. I am trying not to lose hope that we will find a drug that will make her seizure free but this is her fifth drug. It is possible for her to become seizure free, but as each new drug is tried and failed, her chances decrease.
Sophie is currently having about 100 seizures a day. Her seizures are becoming more severe - almost as severe as when she was first diagnosed. She will be having an EEG on Monday to make sure the hypsarrhythmia has not returned.
Sophie is currently having about 100 seizures a day. Her seizures are becoming more severe - almost as severe as when she was first diagnosed. She will be having an EEG on Monday to make sure the hypsarrhythmia has not returned.
2 comments:
What a struggle this is for all of you!! As always, Sophie, you and Brad our in our thoughts and prayers constantly. We'll especially be thinking of her on Monday when her EEG is repeated. I know there are no words of comfort...just remember we love you all.
Stay strong.
Love,
Barb
Elaine,
You mentioned your blog a couple of weeks ago and I finally did a search and so glad i can keep up with you all know that I won't see you very much.
What a pleasure it is to know you all and to have had the chance to work with your darling Sophie. I am so sorry to hear the medication is still a roller coster for you. My thoughts and prayers are will you all... April Curtis
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