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Rare form of Epilepsy

Thu, 05/28/2015 - 19:55

Hi,

We just got back our genetic test results for our 4 year old son. He has a gene variation in KCNT1 gene that causes Nocturnal Frontal Lobe Epilepsy/ (EIEE). 

He hasn't had any grand mal seizures ...all his seizures are staring spells, coupled with poking corner of his eyes, covering his ears, confused and wailing and crying as though he saw a ghost. He is non verbal now and has lot of developmental delays. Our neuro changed his medication from ethosuximide to Depahkote. I'm looking to connect with other parents or adults who have had similar experience as my child.What medication worked for this kind of epilepsy? For some I know a combination works and now there are new drugs under research. Did your child's development get affected because of epilepsy? And was there any improvement when the seizures were under control? Also, since my child is unable to share his experience with me, I would like to know if this eye poking, covering ears, nightmares etc is something that happens before/after or during a seizure. This is all so new and even more complicated when the child is unable to tell anything but seems to be in terrible pain! It really sucks to watch him go through this on and off and not being able to help! :(

Thanks so much!

 

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