Baby type 1

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Samaiyu
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Baby type 1

Postby Samaiyu » Tue Feb 02, 2016 4:22 am

Hi my baby os 8m.o diagnosed type 1 4 minths ago. Started bipap 2 months ago. Currently on bipap 24h for past 1month admitted. Convinced the respi ppl to start cough assist after baby kep desating and their management didnt seem like it was working they gave in. But no one has a clue as to what preassures to use.
She is 5.5kg 70cm long. Using bipap resmed 100. Settings ipap 17 epap 9 rate 40 ins time 0.5s.
So far have trialed cough assist respironics e70 at -25+25 ins time 1s exp t 1s pause 1s.
Please help. I dont have confidence the doctors know enough as they keep telling me sma type 1 dont live past 2 yrs and i think they wrong. Premorbid my kid was only on bipap when sleeping and that was only after we saw this pulmunologist. Unfortunately they are few around in malaysia

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bachjr
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Re: Baby type 1

Postby bachjr » Wed Mar 02, 2016 7:10 pm

The BiPAP is not optimal because the EPAP is counterproductive but you can lower it to 4 cm H2O. CoughAssist should always be used at 50 to 60 cm H2O in and out as described in http://www.breatheNVS.com click on SMA1 there.
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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