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#1 Ukmum

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Posted 15 September 2011 - 03:54 PM

Hi
My daughter is 7 and we are currently waiting for her overnight sleep study and MLST which should be done before christmas. I was just hoping for some feedback from people that have experienced N.

My daughter hangs her mouth open with her tongue forward (almost hanging out) which the Neuro has said is often seen in childhood cataplexy. But it doesn't seem to be brought on by anything, it just happens quite often, several time a day. Some days she is like that nearly all day. Have you or your children experienced this?

Also there are time when she doesn't want to sleep even if she seems tired, she'll fight it. Surely she would sleep at every opportunity if she was narcoleptic?

I would really appreciate some feedback.


With thanks

#2 merrymom1013

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Posted 16 September 2011 - 12:04 PM

My daughter was about 10 when she developed symptoms. She would fight the sleepiness (she's in college & still does) and get irritable. Have you ever watched an overtired toddler? They get more wound up the more sleepy they get sometimes. As for the cataplexy, my daughter's was severe & affected her whole body. I used to have trouble connecting it to a particular emotion, though the common thread was it increased when she was tired. In hindsight, it was also connected to anger or frustration, even if I didn't see the emotion at the time. Good luck with the testing. How wonderful that you have a doctor that is willing to pursue this testing at this age!

#3 Helpmyson

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Posted 01 December 2011 - 09:23 AM

Hello there!!! I was wondering if you have gotten any further answers. My son does the same thing with his mouth and tongue and we are just starting to figure out wether he has N or not. Hope all is well!

#4 Ukmum

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Posted 13 December 2011 - 04:45 AM

Hello there!!! I was wondering if you have gotten any further answers. My son does the same thing with his mouth and tongue and we are just starting to figure out wether he has N or not. Hope all is well!


Hi we have just got the results and she does have narcolepsy. The doc said that the mouth and tongue thing as well as the eyes half open/closed is all normal in childhood narcolepsy onset and often disappears on its own (within about a year). Hope you get some answers soon. x

#5 Taylenne

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Posted 16 January 2012 - 02:02 PM

I know it's been a while since you originally posted this, but I wanted to chime in with our experience.

My daughter is 6 yrs old. She was diagnosed with narcolepsy and cataplexy about 8 months ago (May/11). She also hangs her mouth open with her tongue partially sticking out, eyes half closed. Some days it is clearly associated with an emotion-triggered cataplexy attack... other days it is just there almost constantly. It seems to be affected by how much sleep she got the day or two prior. If she's behind on her sleep, her cataplexy and facial weakness is much worse. If she's been well rested for several days, her cataplexy comes on only in clearly defined moments of emotion (laughter, but also pride and affection). My daughter's cataplexy is extremely severe - between 10-50 complete collapses per day and 20-50 partial collapses. She is taking prozac for the cataplexy, which has cut the falls from 100+ per day down to the current level.

UKMom, if you are interested in corresponding via email, I am very much interested in finding another parent with a young child with narc and cataplexy. I have yet to find one and would welcome a chance to "talk" about it with someone who understands!

If interested, please email me at Taylenne @ yahoo.ca (remove the spaces)

Tay (mom to "sleeping beauty")