SMA1 child not breathing itself

Please use this forum for any general discussions or questions you have about noninvasive ventilatory support and mechanical insufflation-exsufflation (MIE).
Fiorello
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Diagnosis: sma1
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SMA1 child not breathing itself

Postby Fiorello » Wed Jul 27, 2016 5:40 am

am dad child from a 7.5 years sma. 1 Now one year it 24 hours non're invasive ventilation. Now we have found that he is not breathing alone and the rest in night saettigungsabfaelle has. there koennen.danke enable it again or work so that we avoid a possibility trachomenia

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Re: SMA1 child not breathing itself

Postby admin » Thu Jul 28, 2016 9:40 am

Fiorello wrote:Fiorello [7.5 years old] can’t be without non invesive breathing anymore. Without he falls down to 50.

Can we do any sort of excercises or are there any other machines available?

What can wie do to avoid tracho etc?

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bachjr
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Re: SMA1 child not breathing itself

Postby bachjr » Thu Jul 28, 2016 2:37 pm

Fiorello, as I pointed out, he will never need a trach and 50% of kids with SMA1 become 24 hour dependent on nasal NVS before age 10 and 50% after age 10. No exercises can help. Sorry, JB
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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