I wondered if Xyrem was every considered or tried.

Hello,
        Xyrem was prescribed to my son when he was I think 19-20 years old. We had to get it filled through some “main pharmacy” in the middle of the country. It was prescribed by his sleep disorder Doctor here in Southern California. He explained to me that Xyrem was a medication they use for narcoleptic patients to induce a deeper sleep so when they wake up they would feel more refreshed.
        He wanted to try it on Ryan and thought it would make sense for KLS. Well, I did fill the medication but Ryan and I decided we didn’t want to take the chance… We were scared he would never wake up or who knows what kind of reaction he would have with this strong medication. He did not want to be the guinea pig to try it out.
        Wish I could of helped you out more. Will you share your story. If you ever took it and if it worked or not. And what was your doctors thought on why you should take it. It would be very interesting to know. Thanks Iris Robin

My daughter has never tried it. But it has been suggested as something she could possibly try.  But I do not think she will.  You are right that it is a scary drug, but in a way, so are most drugs. At least it is very short-acting. I am very curious about it being tried. No personal story.