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hello i dont know if anyone here remembers me but i have not posted in a year now

im natalie and i have a son Matthew who at the time of me posting was about 16 months old, hes now 28 months and still suffers from central sleep apnoea, severe periodic breathing, central hypoventialtion and hypnoneas

the last time  posted on here we was waiting for matthew ot have alot of tests done to find out what was causing his central apnoeas

well he had them all done last year, after he was admitted as a emergency after needing resus by me at home, and we still do not know what is causing matthews apnoeas
the MRI was clear, EEG all fine, so still no answers to anything, just we understand it abit more now

hes last sleep study was in august and we was told we r never going to find out what is cauing his apnoeas, and they feel caffine or 02 will not help him.

hes still on a apnoea alarm, he has good and bad days, but the last 2 months have been very very bad where hes been having apnoeas non stop for 8 weeks averaging every 5-30 minutes a night so we r all shattered

hes reflux is still not being controlled, so is having more tests for this done on friday

well i shall keep this site in my favs now

love nat


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Oh  wow I totally feel for you.  Aidan (now 5) was like that till he was about 3... (still has troubles, but not as often or as long now, I just found this place... posted for the 1st time too)...he would have "pauses" (of many different kinds) anywhere from 3-30 an hour... it really makes it hard to get ANY rest.  The difference was that his oxygen helped him.
I feel your frustration though... hopefully somethign will turn up to be the answer for you ... soon
HUGS to you


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thank you for reply
welcome to you
sounds like u havent had it easy either, esp as hes 5 now

does he have central apnoeas, or periodic breathing or obstuction

theres so much about sleep apnoea alot of people dont understand,

is ur little boy on an alarm?

love nat

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