Diagnosed sleep disorder and Epi?

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.