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Diagnosed sleep disorder and Epi?

Sat, 03/25/2006 - 20:38
My son has sleep issues. He also has a "seizure disorder" that has not yet been dianosed. I am not sure if he has a sleep disorder, sleep seizures (he has other seizures too) or if he's having seizures in his sleep. Anyone else have a child with a diagnosed sleep disorder in conjunction with epilepsy?

Comments

Re: Diagnosed sleep disorder and Epi?

Submitted by ekoorb on Tue, 2006-04-11 - 08:33
We were in the exact same boat as you. There were a few incidents that occurred in our child's sleep and we were obviously hoping they were nightmares or tied into sleep walking etc. We have been seeing an amazing epilepsy specialist and he explained there are forms of epilepsy where the seizures only occur during sleep. He also said the seizures do not hurt the child's brain. He is not finished with his diagnosis and we are doing a 24 hour EEG soon. If he is satisfied with his diagnosis, he may take her off meds (meds we started because of a different arrogent impatient doctor). What is your child doing during her sleep?

Re: Re: Diagnosed sleep disorder and Epi?

Submitted by jolieweng on Thu, 2006-04-13 - 19:12
Thanks for your feedback. Zakry is going in for a sleep study next week and they are going to also do an eeg during that time also. I don't think they will have the video though. Usually after he's been asleep for a while he jerks his arms, primarily his hands. This occurs during the 2nd stage of sleep. I know that it is normal for everyone to jerk after falling asleep. He just does it repetatively. There have also been several times that he has been tonic and his eyes were wide like a dear in head lights and he repetitively made crying noises. He also has seizures during the day. He has sleep anpean despite having his adnoids removed already. We might need to get the tonsils out too, but he's so little his ENT said he wanted to wait. Zak had bad seizures after his surgery and it makes me nervous for him to do it again. I just know that if he has sleep issues, even if they are not seizures, that the interference of sleep can trigger his daytime siezures. But several times he has seizures in the middle of the night. The scary ones are the grand-mal where once I found him face down in his pillow! Any time that he is sick, he sleeps in our bedroom so that I can clearly hear him. What does your daugther's seziures look like?

Re: Re: Re: Diagnosed sleep disorder and Epi?

Submitted by ekoorb on Thu, 2006-04-13 - 23:11
Are your doctors suggesting the seizures are some how tied into the sleep anpean? Our situation, she does not have a sleep disorder but rather has only had seizures during sleep. That is why we were hoping it was a sleep disorder rather than epilepsy. We were not sure at first if the events were even seizures. Now we know they are. We are dealing with an amazing doctor who just did a 24 EEG with video yesterday and told us he believed she had benign occipital epilepsy(BOE) (same as Panayiotopoulos Syndrome). We had thought it was benign rolandic epilepsy (BRE)but as a result of the eeg, this has been ruled out although it could change to that. With BRE the seizures only occur at night. With BOE, they seem to mostly occur during sleep but not guaranteed only in sleep. She has had around 3 in the last 7 months-- her first one even being one of the three. Typically she sits up during sleep coughing as if she is going to throw up. Then when you ask her if she is ok, then she has that same look as you mentioned eyes wide like a deer.... but she is not responding. It lasts for a few minutes and then she goes back to sleep unless we have woken her and then she goes more into an irritated state. Nausea is associated with this disorder. She also may jerk her leg a little when she sits up as if she is going to throw up. The first time was quite traumatic for us. I went through a lot of sadness and was dealing at first with a horrible doctor who did not know how to communicate. We became grounded and more in control when we started getting more information and more of a grasp on the situation. I hope your sleep study goes well. How old is your child? Mine is 5. She did incredibly well but if you are going for the 24 hour study you need lots of activities because it is a long time to be cooped up! But it is well worth it to get the information you need to make a diagnosis.

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