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MEDICINE - FELBAMATE
Sun, 06/20/2004 - 22:25Topic: Family & Friends
MY GRANDSON HAS LENNOX GAUSTAUT SYNDROME. EVERYTHING HAS BEEN TRIED INCLUDING COMPLETE SPLIT OF THE BRAIN AND NOTHING HAS HELPED. THE DOCTORS ARE NOW SUGGESTING THAT WE TRY FELBAMATE. WE WOULD LIKE TO HEAR FROM ANYONE WHO HAS TRIED THIS MEDICINE AND WOULD LIKE TO KNOW IF IT HAS HELPED.
Comments
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Submitted by badassmoms1 on Sun, 2007-09-23 - 22:15
Paul's Mom,
I just joined this forum and read your post from 06/20. I have had personal experience with felbamate, which resulted in my son being the first known case of severe anemia due to this medicine. He was almost 3yrs. when this happened and had to have an emergency blood transfusion. I hope this med. works for your grandson but look for yellow skin, which was the first sign and extremely tired. My son is now 5yrs. old still battling seizures. He is also diagnosed with LGS.
Good luck.
RE: MEDICINE - FELBAMATE
Submitted by tibet2 on Sun, 2004-06-20 - 22:25
hi, this is a great site. lennox gastaut is such a tough diagnosis. i can't speak of personal experience with felbatol, though i know adults who are very happy with it.has your grandson been on the ketogenic diet? because there are such special considerations with children and seizures you probably should post on the child neuro board at massachusetts general hospital.... brain talk.... http://brain.hastypastry.net/forums/i think i copied that properly... i can't access that forum from my computer but almost everyone else can. scroll down to "child neurology"it's a highly specialized and very active forum.