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Narcolepsy/cataplexy in children...if your child has this, what does it look like?


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DD6 has a sleep study ordered for late May but I was spending some time researching Narcolepsy today so I thought I would check here too. If your child has been diagnosed with narcolepsy, what does it look like? Have any treatments been successful?


DD6 has several mental health issues (PDD-NOS -Aspergers, GAD, SPD, ADD). We have been in BT, OT and use medication for these issues. This fall she started Kindergarten at a local school. She has an IEP and goes 1/2 days. During her 2.5 hours there, she takes a nap. The IEP allows for this as a behavior tool, but she is not really getting 'class' time because of it. She takes medications to help her stay asleep at night (trazodone and clonidine) and they seem to help quite a bit. If she fallls asleep at school, the staff let her sleep until recess and then wake her up. There have been a few times that they couldn't get her to go outside, she was still so tired, so they called the principal into the room to stay with her while the other kids were on recess. Even at home she will often take a nap but not always at that time of day. If she is asleep, there are times that she is VERY difficult to wake up. One time in particular, I was truely worried and considering carrying her to the car to go to the doctor. She just wouldn't wake up! Finally, she did and was completely fine in just a couple of minutes of waking.


She goes to bed at 8, asleep by 830. She wakes up on her own around 7am, so she is getting a solid 10+ hours of sleep. She is awake for 2 hours and then takes a nap at school around 9am every day. She will fall asleep in the middle of the floor, in a room of kindergarteners. It is brightly lit, noisy and uncomfortable (thin rug on concrete floor). We have a sleep mat/spot for her due to her IEP, but sometimes she doesn't even make it to the spot, before she falls asleep. She is stressed at school and while they are making modifications for her it is not the right classroom for her. I only keep her there because we need to complete these steps for her to try/fail so we can move her to a different program for children on the spectrum next year. Due to her issues, I do not want to homeschool her (my personal limitations). I wonder if her nap at school could be a form of cataplexy. She will fall immediately asleep, and is very hard to wake up. Her teacher and principal both have extensive experience with this age group and they both say they have never seen a child fall asleep and sleep as heavy as she does. It isn't just my perspective on how heavy she sleeps. They both say they have seen K'ers that needed a nap, but not 2 hours after waking and not like she does it. Her nap issues started as an occasional thing (0-2 times a week) in the fall, to about 2-3 times a week in winter, but the past 2 months it has been 3-5 times a week. The teachers say it seems like she will just be sitting there one minute and they will look away and she will have just leaned over and fallen sound asleep. That is why I wonder about cataplexy.


We are being seen at Doernbeckers Children's Hospital at OHSU in Portland Ore. It is a well regarded program so I hope that we get some answers to her sleep issue there. The specialist we saw there, does suspect there may be a sleep disorder causing this, and has ordered the study. It just takes a long time to get in.



The sleep specialist, her psychiatrist and our pharmacist all agree it should not have anything to do with her meds.


Any experience with this?

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If it were me I would double check the meds myself. Look for odd/rare reactions. DH used to take a med that would make him sleepy all day and two doctors missed it. Also, has she had a complete vitamin check not just basic blood work.



I am a pharmacy tech and did some limited research on my own. The pharamcist I talked to is one of the best I know. The sleep doctor also agreed (she is a pediatric sleep specialist and a professor) so I feel pretty confident that there is no coorelation. I do know a pharmacist with a specialty in children's medications so I may shoot her an email just to make sure there isn't something I am missing, but unless it is a super rare side effect, it is unlikely.

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