DMD Breathing Problems

Please use this community for general discussions about Duchenne Muscular Dystrophy (DMD).
Julie
New Member
New Member
Posts: 1
Joined: Sat Mar 19, 2016 1:12 pm
Diagnosis: Duchenne
Diagnosed: 2001
City: Sacramento
State or Province: California
Country: United States

Re: DMD Breathing Problems

Postby Julie » Sat Mar 19, 2016 1:19 pm

Hello!

I am the friend in California. My 24 year old son has had 3 sleep studies, one was an in home sleep study and no data was collected. The other two sleep studies did not have enough data if I understand correctly. However I believe some of the data they have showed sleep problems. He is tired alot

User avatar
bachjr
Medical Director
Medical Director
Posts: 135
Joined: Wed Nov 11, 2015 3:07 pm
City: Newark
State or Province: NJ
Country: USA

Re: DMD Breathing Problems

Postby bachjr » Sat Mar 19, 2016 10:11 pm

If you set an oximeter alarm to 95%, normal it goes off at 95% which is still normal. You seem to have a strange oximeter!
BiPAP is not best, noninvasive ventilatory support is. That is why the site is breatheNVS.com, not NIV.com. They need to read the material to understand all of this better. Anyway, they will not find any physician who will save him from getting a trach tube or dying prematurely in California. The closest is in Seattle as they can see in http://www.breatheNVS.com
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

leoscag
New Member
New Member
Posts: 14
Joined: Sat Mar 12, 2016 11:57 am
Diagnosis: DMD
Diagnosed: 1999
City: NYC
State or Province: NY
Country: USA

Re: DMD Breathing Problems

Postby leoscag » Wed Mar 23, 2016 2:45 pm

Dear Dr. Bach

I wanted you to know we followed all your instructions and Johnny is doing well. His ox sat is above 95 with little need to take breaths via mouth piece. He still takes breaths and is air stacking to keep himself strong. Again thank you for all you and Lou do.

Michelle

pgimbel
NVS Expert
NVS Expert
Posts: 5
Joined: Wed Nov 25, 2015 4:36 pm
Diagnosis: Duchenne Muscular Dystrophy
Diagnosed: 1988
City: Scarsdale
State or Province: New York
Country: United States

Re: DMD Breathing Problems

Postby pgimbel » Tue Apr 05, 2016 2:14 pm

How old is her son?

mushyscag
New Member
New Member
Posts: 11
Joined: Sun May 15, 2016 12:15 am
Diagnosis: Duchenne
Diagnosed: 1999
City: Staten Island
State or Province: New York
Country: USA

Re: DMD Breathing Problems

Postby mushyscag » Sun May 15, 2016 12:17 am

I believe her son is 25.


Return to “Duchenne Muscular Dystrophy (DMD)”

Who is online

Users browsing this forum: No registered users and 0 guests