cramps/spasm with seizures while sleeping

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donnajane

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My 21month old has what his dr's thinks are events while sleeping. He is on Tegretol and his Nureo said he really should be "sleeping" better and is unsure why this is happening. As his lesian is deep in his brain when have been told a sleep study (eeg) may not pick up what is going on. We hear him cry out lots overnight and when he does this his body is either stretched back, one or both hand suddenly go out and lock, sometimes a leg or both legs, sometimes it he pulls his head right back. We are not sure if they are events or strange spasms. He is also having absence events overnight we have been able to catch some of these of video. In the mornings and after his afternoon nap he has trouble with his legs. Often he is really unsteady, sometimes they cross over in front of him when he is trying to walk and other times like today his legs were unable to realx and his feet were pointing down. Some days he's very NQR his nureo calls it like waking in a fog (he thinks its caused by events while sleeping) and it takes a bit longer for the "fog" to clear.)
Does anyone who's child/or themselves who have night/sleep events experience this?
Thankfully he usually comes "good" within 30min and can walk, sometimes a little stiff but then gradually he "free's up"
We are off to his Paed tomorrow for his developmental check, has one every 2 months at the moment so will discuss it with her as we are concerned re the amount of times this is happening.

Thanks for reading
Donna
 
donnajane

Yes I had all that as a child and still do it took a while for a diagnoses but you seem to be describing a Grand Mal or Tonic clonic seizure, it could be a good idea to turn him on his side coming to the end and massage his legs a little, the muscles with me stretch and tighten so much there feel like planks of timber or iron bars, do his eyes roll in his head the do with me (most seizures do anyway) I still get the feeling me legs are heavy and I have to massage them. The absence bit I really do not get an odd time but not all the time its usually straight into the seizure. You might want to ask your neurologist about changing drugs, I am not 100% sure of Tegretol for a child.
 
Thanks for this. We saw his Paed today and she has booked him in for a sleep study. She is not sure if it will show anything as his lesian is deep in his brain but she said you never know and its not going to hurt. He has his first appointment on Nov 1st to meet sleep specialist and then they will book him in for his test.
I am just happy that they are checking him overnight as will admit we are a bit worried with what happend some nights.
Thanks again.
Donna
 
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