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sonoranmomma

Any Other Parents Of Children With N Is The Phoenix Area?

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Hi-

My son is just 6 and we are working with Drs to get a final DX but this last one agrees it is N, as I had expected. He had a huge Cataplexy experiance last almost 2 hours, we were in the ER even they seemed clue less. Since then mostly just episodes of him falling asleep when he shouldn't in class, when he has to sit still. I worry for what this will mean to him and his education. I felt so bad when he was asked his hobbies by his summer school teacher and he said legos and I like to sleep!

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Im just now joining this site & saw your post. I feel badly no-one has reached out to you. I do not have a child diagnosed with narcolepsy but I was one at one point. Now as a new mom of 2 baby girls I am concerned that they might be diagnosed at some point.

I have heard that Xyrem has been used on children. You would need to find an experienced sleep doctor that has worked with the medication - usually this wouldn't be a pediatric doctor but rather a doctor that sees adults & has treated some children. 

Hopefully, by now you have found a treatment for him & he is doing better.

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