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Epilepsy/Narcolepsy and Memory Loss (7yr old)

Thu, 03/17/2016 - 17:02
Hi everyone, My son's case is unusual and complicated, but I figured I'd post this somewhere where I have the chance of finding someone with some knowledge/experience. My 7 year old son was diagnosed with Epilepsy back in early 2014, he had left parasagittal spike wave discharges (which increased greatly while asleep). At the time he was having Complex-Partial seizures every 2 weeks or so and they were long. After a long time he was finally seizure free on Carbamazepine and Keppra. He kept falling asleep and being unable to walk or hold his head up or talk when he got mad, and he was just diagnosed with Narcolepsy with Cataplexy at the end of 2015. His seizure meds were so sedating that we weaned him and hoped that what we thought were seizures before were just cataplexy. In the past 2 years, but mainly the past 6 months his memory has become worse. He can no longer remember important, big events that happened last week. He has cried when we thought he was joking. He saw his Neurologist today and he said if it were because of seizures starting from the same area that showed in 2014 then he'd expect my son's language to also be impaired. He briefly tested him and his name recall was a little slow but not concerning. From day to day he shows no signs of any problems with memory, it's only when you ask about something that happened more than a few days ago. He doesn't remember a 2 week trip at Christmas, he doesn't remember a school carnival from last week where he won a full cake from the cake walk game, he doesn't remember a pet rabbit we had and only asked if we ever had one because he saw our bunny hutch on our deck that has been there for the past 2 years. Does this make any kind of sense to anyone out there? He will be repeating a sleep deprived EEG, but both his pediatric Neurologist and pediatric sleep specialist are at a loss.

Comments

Currently he is on no anti

Submitted by TropicalSerenade on Fri, 2016-03-18 - 09:33
Currently he is on no anti-seizure meds. Just a stimulant and melatonin for his Narcolepsy. When he was on anti-seizure meds in 2014 he'd lose memory of most of his day. He had a 3 day EEG at the Children's Hospital here when he was on Carb and Keppra but it showed no abnormalities, he we just losing chunks of his day then and we didn't know why.  His MRI in 2014 was normal as well.Then his memory seemed to get better because he could remember his day, but we realized he was still having issues it was just delayed a few days. His anti-seizure meds made his Narcolepsy and Cataplexy much worse so we weaned him and thought treating the Narcolepsy would help his memory- but it has become worse.He will have this sleep deprived EEG without any seizure meds in his system, so hopefully it'll be a good baseline again of what is going on. Neuropsych referral was put in for my son but it is not a covered benefit with our insurance so that's why his regular pediatric Neuro did some quick in office testing yesterday.  

Hi im Eddie,Ive been having

Submitted by eddiebailey on Mon, 2016-03-21 - 00:29
Hi im Eddie,Ive been having epileptic seizures since i was 9years of age. Im now 24. My seizures have calmed down over the years. I now just have nocturnal seizures, wich is still depressing. I hope and pray someone can help with this. 16 years of this. Ive lost numerous jobs because of this. Its sad i can't stay up and enjoy myself at night cause i go to sleep early to ensure i dont experience a seizure. Years of meds that dont work makes me wonder will i ever get better. The night my daughter was born i had one that lead me into a coma. So i couldn't hold my child for 2 days. Sad...

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