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momslove

narcoplepsy

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We recently completed sleep studies (overnight and napping) for DD and have the appointment this week to review results and discuss treatment plan. I'm finding information about narcolepsy as autoimmune--imagine that! Some information links to strep--imagine that!

 

Wondering what research or similar information any of you might provide--information about narcolepsy and PANS--information of treatment of narcolepsy in a person with PANS.

 

Wondering what experience any of you might share in regards to treating narcolepsy in a person with PANS.

 

Thanks.

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I had a paper a few years ago regarding the link between strep and narcolepsy, but I looked just now and couldn't readily locate it in my archives. But that's to say, yes, I think that this link has been out there for a while.

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Appointment was today. Doctor letter before appointment said "non-REM narcolepsy". Specialist at appointment said that was the old name and with the current naming criteria it is really "ideopathic hypersomnia". She talked about medications like ritalin and the side effects. DD does not want to do any of those meds and DH and I are supportive of her decision. Specialist talked about the autoimmune connection to narcolepsy, but said she doesn't have that. I pointed out her autoimmune history with PANDAS/PANS, Hashimoto, and some diabetes-related thing. She said her current meds which include Luvox are known to suppress REM sleep and could be masking actual narcolepsy, but it would not be advised to go off the meds at this time, just to test. So we have a little more information and some suggestions about improving quality of sleep. We press on.

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