If there is anyone been diagnosed here with EPC (Epilepsy Partialis Continua) trio to Rasmussen Encephalitis (1:1 000 000 case in this world). You may look at my daughter case. Jesie is about 13 months post Hemispherectomy. 1st attacked when she was 4 years old. No fever. Healthy toddler. Than the twitching and jerking movement started at right side of her body. Non stop. 24 hours a day for 23 months. To nail it down... Hemispherectomy is the answer. The surgery was successful... She is 13 months seizures free! Still on Tregettol 5ml twice a day. Out of 5 AED towards to her surgery. We are decreasing Tregettol slowly... hopefully by end of this year she will AED free too. Life without seizures and AED is awesome. She is cognitively and lively. Her awareness, coordination and learning skills is improving aggressively towards the dismissed of hers AED. She is able to walk with support, by holding one hand at this point. My points is... if there is a parents been suggested for an epilepsy surgery to improve your child daily living or future living. Jesie is one who made it tremendously! Even, my journey with Jesie after the surgery will be more rough, but we are prepare well enough to battle it down. Just like we fight to get rid of Rasmussen Encephalitis. Here I attached of Jesies Photo towards on her surgery and current status.
Posted on: Sun, 29 Jun 2014 06:51:13 +0000
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