On Monday evening, we started Sophie on Felbatol. This will be the last medication we try before the surgery. Dr. Epi said this was the only other recommendation she had before the surgery. She had mentioned it to us back in March and we discussed it with our local neurologist and he agreed. We had the blood work done and prescription in hand when we received the call about Sophie being presented at the surgical conference. Needless to say, everything got put on hold. Well, Dr. Epi mentioned it to us again last week. She said she has seen success with this drug when everything else has failed. So after e-mailing back and forth a few times with Dr. Chugani, he was on board.
We started off with .5ml on Monday evening. On Tuesday, we increased to .5ml twice a day. Today, we increased to .5ml three times a day. Our max dose will be 2ml three times a day. So far, we have not seen any difference. We are also down to 100mg of Banzel twice a day. We are holding steady at 3ml of Neurontin in the evening.
We started off with .5ml on Monday evening. On Tuesday, we increased to .5ml twice a day. Today, we increased to .5ml three times a day. Our max dose will be 2ml three times a day. So far, we have not seen any difference. We are also down to 100mg of Banzel twice a day. We are holding steady at 3ml of Neurontin in the evening.
4 comments:
I'm so glad that you and Brad have gotten such great feedback from the specialists in this small community that devote themselves to treating epilepsy.
Our fingers are crossed that Sophie will be home from her surgery and into her follow up therapy by the time her little brother arrives.
Hope the news that all are in agreement that this surgery is the best course for Sophie allows you to sleep a little easier.
Hang in there guys!!
Love,
Barb
Never heard of that one...but then we've only been at this a fraction of what you guys have been.
With kali, it took a bit before we noticed anything with the Felbatol. I would say a good month. It wasn't sudden, very slow.
Kali's final dose is 1.5ml 3/x daily. We had to work up slowly also.
We tried Felbatol but only for a short time because Reagan's seizures seemed to get worse. I do know of several kids that it seems to work really well for. You just never know unless you try! Hopefully this will be Sophie's miracle medication and surgery won't even be necessary! Take care,
Tera
Post a Comment