A place where families of infants with seizures can talk and support each other.
Latest Activity: May 6
Started by Zoe Lewis. Last reply by Rivka Felsher Nov 19, 2009.
My daughter was diagnosed with pyridoxal phosphate dependent epilepsy it is very rare if you know more about this please let me know what more I can do to help her.
Hi all. My son is almost 11mo. He had his first seizure around 9mo, and I called my mom (she's a nurse) and she'd said not to worry about it. Stupid me :-\ A month later he had two grand mall seizures 10 minutes apart. I called 911. After spending 3 days in the hospital, and all his tests coming back normal, I started doing more research about seizures and found out the spasms he had been having since 5mo weren't just "silly baby", but actually seizures as well. At the follow up with the neurologist I told him about the spasms, and he diagnosed "a seizure disorder" and put him on Keppra. He hasn't had another grand mall, but the spasms continued though fewer and farther between. Then on Monday they started again. He sees his neurologist today, so we'll see what he says....
My son is 5 weeks only now and had his first seizure at 9 days of life. He has now been diagnosed with Pyridoxal 5-Phosphate Dependent Epilepsy. This form of epilepsy is very underdiagnosed so if you have an infant with seizures without a known cause, please read my post- http://epilepsyfoundation.ning.com/group/pyridoxal-5-phosphate-depe....
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