Proactive use of BiPAP for Type 2 SMA

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Dominic
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Posts: 3
Joined: Thu Aug 18, 2016 8:16 pm
Diagnosis: Spinal Muscular Atrophy (Type 2)
Diagnosed: 2015
City: Dieppe
State or Province: New Brunswick
Country: Canada

Proactive use of BiPAP for Type 2 SMA

Postby Dominic » Thu Aug 18, 2016 8:27 pm

We are getting misleading information when it comes to the proactive use of a BiPAP machine. At this time our son (3 year old, Type 2) does not require the use of a BiPAP at night (following a sleep study this may change) but does show signs of a chest deformity (Pectus Excavatum) that we have heard could be fixed or helped by the use of a BiPAP machine. This would have been done by expanding the chest cavity with a positive pressure throughout the night that could simulate normal breathing and reverse the chest depression. For this reason we were strongly considering adding this therapy to his routine.

We have however also heard that the prolonged use of a BiPAP may render the user dependent on the machine and it would weaken the reflexive muscle so that when the machine is not being used, the patient would have a weaker breath.

What do you think?

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bachjr
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City: Newark
State or Province: NJ
Country: USA

Re: Proactive use of BiPAP for Type 2 SMA

Postby bachjr » Mon May 15, 2017 4:26 pm

If your child has paradoxical breathing, the chest sinks in when the belly goes out, then he needs nasal ventilation during sleep (not BiPAP) to reverse this otherwise his lungs will not grow. The "sleep studies" being done are useless. Also, no one
"becomes dependent on BiPAP" because of using it. You have much to learn and should be reading http://www.breatheNVS.com more and visiting the centers listed there, which are the only ones that can really help you.
John R. Bach MD
Medical Director, VentilaMed BreatheNVS
Medical Director, Center for Ventilator Management Alternatives
Professor of Physical Medicine and Rehabilitation, Professor of Neurology, Rutgers New Jersey Medical School


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