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Intractable epilepsy - infantile spasms leading to hemispherectomy
Sun, 12/05/2010 - 14:18Topic: Advocate for Epilepsy
Hello. I wanted to take a moment to let others know that my baby son Evan (10 months) was diagnosed at 3 months with infantile spasms. His status became intractable after several medication trials were performed including 3 ratios of the ketogenic diet. Two weeks ago, Evan received a left hemispherectomy at UCLA Medical Center in Los Angeles, California, which involves removing the entire left side of his brain. He has since been seizure free! I've started a website for Evan, www.evanstauff.com , for others to come and learn more about infantile spasms and help spread awareness. It is my hope that we can help other parents and those affected by intractable epilepsy in infants, as well as recognize the signs of infant seizures early on. I understand the frustration this can bring, and want others to know they are not alone and that there may be more options if nothing seems to work. Thanks! Come Follow Evan!