Community Forum Archive

Newborn Seizures -- New to Website

Tue, 10/29/2013 - 14:03
Hello, my name is Amanda. I have two sons, a 3 year old and my little Ben who was born in August of this year. Ben has been having seizures since shortly after birth. His birth had been typical and the pregnancy was fairly normal (a UTI and sinus infection, otherwise standard). At first doctors dismissed it as "newborn twitching", his nervous system developing. Then they seemed to stop for a couple weeks, then started and were really intense. He was having generally about 30 seizures a day. So we went to the ER he was admitted, and he is having seizures and his EEG was abnormal, his MRI was normal, and to date ALL testing that has been has been normal. So there is no explanation for his seizures, he is on phenobarbital which is constantly being upped but he has yet to see ONE seizure free day, his neuro has JUST prescribed Keppra in addition to the phenobarb which we started today. Neurologist is worried about his vision and says his brain activity is slow and he may be "slow". Anyone with a similar situation or advice? I am hoping if we can control the seizures he can be the normal little baby he was meant to be, instead of dazed and sleepy 24/7, he barely has a personality and it breaks my heart. Also my mother has epilepsy which didn't start until she was 16, neurologist does not think they are related, but I have had experience with seizures prior to my son.

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