"Hi
My sleep clinic discharged me, saying they were happy I was self-managing. Roll on a decade and the cardiologists taking care of me were very unimpressed and I was re-enrolled. I expect remote monitoring with current generation Resmed…"
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narcolepsy . . . cataplexy
Hi
anyone got any experience with narcolepsy-cataplexy in toddlers ? Took Jaydon to gp today and he suspects he has narcolepsy or absense seizures
Will a PSG pick up narcolepsy ?
Thanks
Carol
Views: 194
Replies to This Discussion
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Permalink Reply by carol murphy on
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Thank you ....he has ones a few times a day where he looks like someone has push a pause button and non responsive they are so short seconds .... he had a big 13 minutes one about 3 weeks ago where he was slouched, floppy,staring, and non responsive and the day before he had an episode were we thought he was asleep but wasnt and then todays which are in the video .... he had a febrile seizure in May and his left hand and toe were the same as in todays videos for hours after and we had no explaination to what caused the temporary paralyisis he almost looked liked he was paralysed on his left side like someone who had a stroke and the "episode " today he had a cupped left hand ,then fanned and the hitch hiker big toe on the left and puffy breathing with nasal flarring ...... at the moment they are saying "absence seizures" though they have no concrete evidence ..... he recently was diagnosed with hypotonia (left side weakness ) and weak torso probably through lack of oxygen when he was tiny :) he has so much going on and we are waiting on so many diagnostic tests Im sure it will all become clear by the end of the year with any luck
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Permalink Reply by Kath Hope on
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Sorry I'm not much help Carol, but you have a gorgeous little boy :)
carol murphy said:
Kath I totally agree and we have the eeg on wednesday at 1pm 9 days after referral and its NHS :)
Rock thank you so so much for your information I really appreciate it
Today Jaydon woke from a nap around 15 minutes in screaming and then crying like in pain I took videos of what followed I noted his left toes hyperextended and his left hand was cupped and he wasnt using it links below if anyone has any knowledge I would love feedback
http://youtu.be/AOcRHtGoP5s
http://youtu.be/qsXXKgwckbc
http://youtu.be/2dDAFol9i4w
http://youtu.be/cSUP9UpqEMkWill keep you posted oh the PSG is definately November sometime !
Carol
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Eeg done to wait for consultant to look at it they did say there was definately something in T15 double dutch to me and I was earwigging ;) so now its a waiting game
Rock do you know what part of the brain contact T15 monitors?
They did say he may need a sleep eeg done it will be up to consultant
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One step nearer then Carol. Hope you don't have too long to wait.......
carol murphy said:
Eeg done to wait for consultant to look at it they did say there was definately something in T15 double dutch to me and I was earwigging ;) so now its a waiting game
Rock do you know what part of the brain contact T15 monitors?
They did say he may need a sleep eeg done it will be up to consultant
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Permalink Reply by RockRpsgt on
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T stands for temporal. The temporal area runs from about the sideburn to just a little bit past the ear.
This site is loaded with info for all ages.
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thanks Rock I knew you would have the knowledge you are a star :)
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Hi Rock
they did the eeg and said he moved alot but when he had his eyes closed and was still there wasnt anything abnormal he is still having absence episodes so I have to keep a diary and record any episodes if I can but so far as they are so brief by the time I notice one get the mobile get the video camera on its over :(
Got date today for PSG 23rd of November he will go to theater the following day for a MLB scope and anything needing to come out or be lazered will be
Thanks for asking
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