Anyone have any experience with seizures in an infant?

Rhea - posted on 01/13/2011 ( 2 moms have responded )

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My son whois 56 days old has had seizures since birth. The neurologists haven't been able to find a cause, and have no been able to get them under control. We are on high doses of 3 seizure meds, and nothing seems to stop them. I'm worried that we are looking at doing a drug unduced coma to stop them. Anyone have any suggestions?

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Iridescent - posted on 01/14/2011

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Have they discussed doing a focal point study and removing the seizure causing points of his brain? I know it sounds extreme, but it's likely a better alternative than a coma. Is it possible he has just benign infantile seizures (which do not look normal "safe", they look scary as heck!) which drugs cannot treat effectively and he simply needs to outgrow them, usually by age 5? I'd suggest you contact someone on the Epilepsy Foundation.

Infantile Spasms - he is young to have developed this type (usually starts at 3 months, not birth), but that never means it's not possible. http://www.epilepsy.com/epilepsy/epileps... Have they ever tried steroid therapy instead of seizure meds as a treatment?

http://www.epilepsyfoundation.org/about/... - Epilepsy Foundation. There are links on the right hand side of this page regarding many treatment types. Have they put him on the infant ketogenic diet formula (it does exist!)? At his age, it doesn't seem as though they could have, as it takes a few months to get into the system and working if it's going to and he's not even a few months old yet. There is also Vagus Nerve Stimulation and the removal of the areas of the brain causing them (focal points). LOTS of better alternatives than coma.

Sarah - posted on 01/13/2011

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im not sure if this will help but as my daughters alot older (nearly 19 months) but all of a sudden she has been having seizures.it ussually happens when she gets too excited, too upset fustrated etc.... she stiffens up and her eyes roll back, she falls to the floor and turns blue, stops breathing awhile and comes round. have been told its known as blue breath holding syndrome and can happen from birth up until school years.its horrible and so scary but apart from the fact a have to watch her incase she hits her head there are no cures (just something they grow out of) and there are no lasting effects to it either. maybe ask your peadiatrition about it and they could prehaps look into it for you. hope this was helpfull and hope you get the answers your looking for.

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