Trilogy 100 settings for SMA

Please use this forum for any general discussions or questions you have about noninvasive ventilatory support and mechanical insufflation-exsufflation (MIE).
DonnaLa
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Trilogy 100 settings for SMA

Postby DonnaLa » Wed Apr 27, 2016 2:58 pm

My daughter has SMA II, she is 29 years old, 4' 10" and 54 lbs. She recently switched to the trilogy system for bipap. An ongoing problem she has is trying to find doctors who understand SMA - in the adult world. The pulmonary dr. who prescribed this machine is not experienced with SMA. Can you please tell us what the protocol for the settings of this machine would be for someone with SMA? She is having trouble adjusting to this new machine and we would like some expert advise to take to her doctor.

We appreciate any information you can provide.

Thank you,

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bachjr
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Re: Trilogy 100 settings for SMA

Postby bachjr » Mon May 02, 2016 6:29 pm

Have your daughter's respiratory parameters been evaluated? (See Evaluation & Management at .)

If your pulmonologist is not experienced with noninvasive respiratory management, then he/she should review the website and publications or your daughter should go to a center for noninvasive respiratory management:
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

DonnaLa
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Posts: 2
Joined: Wed Apr 27, 2016 2:50 pm
Diagnosis: Spinal Muscular Atrophy
Diagnosed: 1988
City: West Chester
State or Province: PA
Country: United States

Re: Trilogy 100 settings for SMA

Postby DonnaLa » Fri May 06, 2016 10:28 am

Thank you for this information - it will certainly help in explaining this to our doctors. I contacted Grace Sia about making an appointment - hope to meet you soon.


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