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worried sick
my daughter has a rare muscle disease.....sleep apnoea...any help or advice.....
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Avatar_universal
Hello and hope you are doing well.

Understand your predicament. If the sleep apneas are due to the muscle disease, she may need SV BiPAP, as it is pressure support ventilation. Also, depending on her oxygen saturation levels, she may given supplemental oxygen.

Hope this helped and do keep us posted.
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i know..she has centronuclear myopathy..got appt with a dr,,,will let u know how we get on thankyou for your response
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hi..i know you probably have millions of posts to go over..but we went for my daughters appointment...i thought there may of been other alternatives but she basically needs the CPAP.. and i know its not oxygen..its pressure of air flow..obviously related to her rare muscle disease...but..we have to go and stay over in hospital to try to ensure maria gets used to using the CPAP... as right now there is no alternative...
im not posting to ask a question..im just updating like i said i would...But..any helpful advice or even just reassuring words would be very much appreciated
with regards
lisa
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Hello and hope you are doing well.

Dear lisa, please don't worry. Pressure support ventilation, where air under gentle pressure is passed into the airways keeping it patent. A CPAP delivers continuous pressure for both inhaling and exhaling. As this supplies continuous amount of air pressure the person has to exhale against this extra pressure. This makes it imperfect or unsuitable for certain people, such as those who are suffering from neuromuscular diseases.

Where as, a BiPAP machine allows the air that is delivered through the mask to be set at one pressure for inhaling and another for exhaling. This makes it much easier for the user to adapt to the apparatus and allows a person who has a neuromuscular disease to use the device. These dual settings also allow the user to get more air in and out of his or her lungs.

So, discuss these options with your doctor and wish you luck.

Hope this helped and do keep us posted.
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thankyou so much dr.anitha for your help and advice,your the first doctor who has offered helpful advice and i appreciate that very much.
we are now just waiting to go and stay over in the hospital..they said it could take a day or up to 5..i think a lot of the problem is..which i dont think i mentioned.is maria wont go in lifts.or lock doors behind her,she is somewhat claustraphobic..not totally,she is ok in small spaces as long as she isnt locked in them..lifts,public toilets etc....
i just want to thankyou again dr. and also,happy new year to you also..
with best wishes,lisa and family
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