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Genetic Seizure Disorders

post #1 of 3
Thread Starter 

Anyone know know much about genetic seizure disorders? My 6 week old started having tonic clonic seizures at 1 week old. She's on phenobarbital twice a day and has already needed an increase. I'm hoping she outgrows them as she gets bigger. The neurologists think it is a genetic thing because there is a strong family history of seizures on her dad's side of the family.

post #2 of 3

Hello, sorry your little one is having a tough start.  

My ds has epilepsy; mostly partial simple and partial complex seizures, but has also had tonic clonic infrequently. We did not realize he was having seizures until he was 9, but neuro thinks he had them quite young based on descriptions of "episodes".  We can trace back 4 generations on dh's side that did have seizures and it is unlikely that it was caused by injury.   Our neuro thinks epilepsy.com is best resource regarding info for seizures, treatment, etc.  They have a professional version of the site, but I mostly utilize the main site unless I am researching drugs that ds might take.  I also use their app for tracking meds and seizures on my phone.  

Children can out grow epilepsy- 50-85% (I have seen a range in numbers because depends on the type)... first ped we saw told us when ds was dx that his epilepsy was benign and he would outgrow it, but neuro does not agree necessarily.  

post #3 of 3

My son had seizures as an infant due to a genetic deletion (16p11.2) but his seizures were, at that time, considered to be idiopathic vs. epilespy.  He was on pheno for 8 months and outgrew the dosage.  Thank Gd, he's been seizure free since.



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