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question about seizures--please help
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librarianmama posted:
Hi,

I posted a question several months ago about my 2 year old daughter having an unexplained seizure. She had an EEG and an EKG and they were both normal. There was one little spot on the EEG right before she fell asleep but the doctor wasn't concerned about it. Well, last weekend she had another one. She was playing and just fell over, stopped breathing, or slowed down enough that her lips were turning blue by the time we got to her. it took her about an hour to an hour and a half to completely come back around to being her normal self. Absolutely terrifying for us! Her pediatrician has referred us to the neurologist, but they can't see her until the end of April. We're pretty nervous, even though her doctor has assured us that she should be fine until then. She doesn't sleep that well at night, she never has. At two years old, she still doesn't sleep consistantly through the night. As far as I know we do everything right, she puts herself to sleep, white noise, all the things we've been told to do. She falls asleep just fine. She just can't seem to stay asleep. Could this be a contributing factor to the seizures? Could this consistent lack of good sleep be messing up her brain? She is perfectly normal in all other aspects. Actually a bit ahead of normal (in my opinion! ) Also, in your professional opinion, is 3 months too long to wait to be evaluated?
Thank you so much for your response!
Emily
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Roy Benaroch, MD responded:
Pediatric neurology is a very under-served specialty. I believe some states don't have even a single ped neurologist, and many big cities have a bare handful. Access to their services is very poor. We can talk perhaps some other time about why that is the case, but there isn't much you or your pediatrician can do about it. Specialists cannot magically make more time to see more kids. Believe me, they are already very, very busy.

Having had a second seizure in a relatively short time, it may be a good idea to start a medicine to prevent seizures, even before seeing the ped neuro. Your pediatrician may be able to make a friendly phone call to the neurologist for direction if he or she isn't comfortable doing this on his own.

I do not think it is likely that the lack of sleep is contributing to this in any way. Your pediatrician ought to be able to help you with strategies to help sleep habits.

Best of luck!
 
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librarianmama replied to Roy Benaroch, MD's response:
Thank you so much Dr. Benaroch. We are very blessed to have a pediatric neurology department at the children's hospital in the city where we live. I completely understand why we can't be seen, but as a parent, it's just really difficult to wait.
 
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librarianmama replied to librarianmama's response:
Well, she had another seizure a couple of weeks ago. She didn't collapse with this one, just started trembling after naptime in one of her arms/shoulders and I think head and lips and was unresponsive. The doctor still doesn't seem concerned enough to do anything proactive at this point, which I'm glad of. It's really stressful though, because we're constantly waiting for something else to happen. I know the poor thing's getting tired of me asking her if she's alright! Hopefully we'll get some answers soon. I've read about other children having mutiple seiures in a day or week, she's only had three, the first two six months apart, the third one a couple of weeks later. I can't help but wonder if she's got a pretty good chance of having more or if this could possibly, hopefully, be the last of it?


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