Newbie questions

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  • #12385
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    Momentum
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    @momentum

    Hi All,
    Great site! Glad I found after much research! I’m the parent of a 20 year old that I’ve suspected some type of sleep disorder for a while. It wasn’t until I read, recently, that NPs don’t usually spontaneously fall asleep like Mr. Bean, that I even looked into it.
    HISTORY:
    One parent has cataplexy (decades), but has had high day energy until 50 years of age. No day time sleepiness (until 50), but falls asleep quickly. (I’ve read on some resources that cataplexy is always with narcolepsy, but I believe that is not supported on this site.)
    The other parent has sleep paralysis, and extreme (familial) insomnia – which may actually be Delayed Sleep Phase Disorder.?
    Adult child – as infant hardly moved in bed, same position for hours
    Chubby baby, chubby still
    Had bad case of MRSA at 2
    Childhood – Still didn’t move much in sleep, very hard to wake, never refreshed, always tired. Sleep talker. Enurisis into early teens. Difficulty with motor skills. Extremely left brain oriented. Shy. Up until 10 or so, would spontaneously fall down while walking into a room – seemingly silly clumsy. Was definitely hypnotic with video games (yeah, I read that can be a symptom in kids). No sleep apnea type breathing, no restless leg symptoms.
    Currently, exhausted, depressed, unemployed having trouble navigating life.
    I need to ask about any current cataplexy and sleep paralysis symptoms.

    I think the enurisis could be due to something else as one parent had similar issues along with other neuro issues including desensitized bladder sensation.IDK

    Niemann-Pick disease seems unlikely, but maybe possible. ?

    My concern is getting a proper diagnosis – soon. Myself dealing with years of complex health issues know the specialist merry-go-round all too well. I want to deal with docs in the know. Tempted to book at Stanford, but did see a comment here regarding Stanford references. Plus they are booking in June. Maybe a doc here? Called specialist in Seattle, but they have some incorrect sleep info on their site about other sleep disorders…hmmmm. Looked for a list of references on this site, but don’t see one. Please excuse if I missed. Reach out if you can help.

    Thanks if you made it to the end. Help me help my kid!
    Thanks!

    #12387
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    Momentum
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    @momentum

    Looks like Dr. Rama isn’t on our insurance.

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