DMD Breathing Problems

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leoscag
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DMD Breathing Problems

Postby leoscag » Sat Mar 12, 2016 12:02 pm

Signs to look for

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Re: DMD Breathing Problems

Postby leoscag » Sat Mar 12, 2016 12:03 pm

Dear Dr Bach
His X-ray was clear on Thursday morning so we took him home. We would of rather been in your hospital. Where you know his condition. Now yesterday afternoon he was at 98 at first. He couldn't maintain it so he asked to be masked. We have been cough assisting but how often should we do it? He will say nothing is there and his throat is dry so stop. I can hear congestion with his weak cough and when I cough assist him nothing is coming out into his mouth? Should it? He will drop to 88 and go up to 95 or 96 taking breaths or after cough assisting. But will drop to 89 and then climb to 94 and then drop. How do I know if he is developing pneumonia?

Thanks
Michelle

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Re: DMD Breathing Problems

Postby bachjr » Sun Mar 13, 2016 10:34 am

Considering what his VC was two years ago when he last came here, it must now be less than 300 ml therefore he needs to use mouthpiece IPPV during the day and nasal at night otherwise his O2 sat will decrease and his CO2 will increase eventually to the point that he will stop breathing (esp. if getting O2). See that he uses his vent correctly day and night and the CoughAssist when needed to keep the O2 sat over 94% and with good heart function he as the possibility to live into his 50s like other people with DMD.
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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Re: DMD Breathing Problems

Postby bachjr » Sun Mar 13, 2016 10:34 am

Considering what his VC was two years ago when he last came here, it must now be less than 300 ml therefore he needs to use mouthpiece IPPV during the day and nasal at night otherwise his O2 sat will decrease and his CO2 will increase eventually to the point that he will stop breathing (esp. if getting O2). See that he uses his vent correctly day and night and the CoughAssist when needed to keep the O2 sat over 94% and with good heart function he as the possibility to live into his 50s like some other people with DMD.
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
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Re: DMD Breathing Problems

Postby leoscag » Mon Mar 14, 2016 3:45 pm

Thank you for your reply and right now he needs to take a breath every 15 seconds with the mouthpiece, very few without the machine, will he eventually be able to be less reliant on the machine like he use to be?

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Re: DMD Breathing Problems

Postby leoscag » Mon Mar 14, 2016 4:06 pm

Should we use a warm mist humidifier? Since Johnny has the flu. he is coughing and you can hear it breaking up and when cough assisted he says it has come out and must went into the cough assist because we don't see it in his mouth. is that possible? And like you said there not a lot of hospitals for people for Centers of Noninvasive Respiratory Management why is that and how can that be changed?

michelle

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Re: DMD Breathing Problems

Postby bachjr » Mon Mar 14, 2016 7:40 pm

1. Michelle, unfortunately, the answer to your question is very unlikely.
2. "sputum must went into the cough assist because we don't see it in his mouth. is that possible?" - Absolutely. Remember, dried out sputum is difficult to expulse without bleeding and liquid sputum lines the bronchi and is almost impossible to cough out. Humidification is an art to make the sputum just right so that cough flows expulse it.
3. The entire American medical system would have to be overhauled so that keeping people healthy is incentivized rather than performing invasive procedures on them that they don't need. 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

leoscag
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Re: DMD Breathing Problems

Postby leoscag » Mon Mar 14, 2016 8:04 pm

Will cough assisting and air stacking help with trying to repair the damage from the flu? He has said and he was hysterical that if he has use the mouth piece every second it would just kill him.
michelle

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Re: DMD Breathing Problems

Postby bachjr » Tue Mar 15, 2016 7:22 am

Yes, he will get better but will always need the mouth piece or use nasal during the day. I have hundreds of people using mouth piece ventilation during the day, some for over 60 years, and many work full-time and have full lives anyway. Happiness is mostly a matter of attitude. People can overcome almost anything if they want to be happy.
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
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Re: DMD Breathing Problems

Postby leoscag » Tue Mar 15, 2016 2:25 pm

Yes I know he will need the mouth piece and mask. Im just hoping he hasn't deteriorated more from the flu. He has a great attitude as you know.

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Re: DMD Breathing Problems

Postby leoscag » Tue Mar 15, 2016 2:48 pm

So originally the dr thought Johnny had a sore throat and gave him Cefprozil 500mg antibiotic twice a day. Now that we know since last Wednesday its the flu Johnny wants to know can he stop the antibiotic? My husband said to leave him on it because his concern is that if we couldn't keep the mucus out of his lungs it could turn into pneumonia and if he's on an antibiotic that could help stop pneumonia. So my question is: Is he right? And if not can we stop the antibiotic because Johnny said it makes him nausea and causes diarrhea.

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Re: DMD Breathing Problems

Postby bachjr » Tue Mar 15, 2016 3:00 pm

Considering his symptoms I would recommend stopping the antibiotic. Antibiotics have no effect on flu viruses and if you keep the O2 sat normal there is little chance of getting any pneumonia from this.
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
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Re: DMD Breathing Problems

Postby leoscag » Tue Mar 15, 2016 3:41 pm

Ok without a breath for 5 min when he is playing his video games ( because the game is intense) he does drop to to 87 but can bring it up to 98 by via mouth. so im guessing its ok to stop the antibiotic as long as we keep it normal via mouth, mask and cough assisting. Right?

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Re: DMD Breathing Problems

Postby bachjr » Tue Mar 15, 2016 6:22 pm

Yes, but he should use the mouth piece a little more frequently, like as soon as the O2 sat decreases below 95%. We often do this by setting an oximetry alarm at 94%.
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
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Posts: 14
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Diagnosis: DMD
Diagnosed: 1999
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Country: USA

Re: DMD Breathing Problems

Postby leoscag » Tue Mar 15, 2016 6:28 pm

Ok we have the oximetry set up as soon as it rings he takes a breath and he does in between. at one point he asked for his mask from getting tired of trying to keep up.

leoscag
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Re: DMD Breathing Problems

Postby leoscag » Wed Mar 16, 2016 7:53 pm

Dear dr. Bach
Johnny is still recovering from the flu as you know. At the moment if he wears his mask his numbers are 97 to 100 saturation. When not wearing the mask he has to take a breath via mouth continuously. As soon as he stops he goes down to 87 then takes 5 to 10 breaths and goes to 97 then drops almost instantly to 88. I am cough assisting him every 1/2 hour or more when he asks. What should we do? And why is this happening?

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Re: DMD Breathing Problems

Postby bachjr » Wed Mar 16, 2016 7:57 pm

He should not "stop" and keep using the Cough Assist the way you are. Keep the O2 sat over 94%, not just over 88%.
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
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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 16, 2016 8:11 pm

Ok but I think hes getting tired so we can mask it? And if so how often to cough assist when using the mask because hes getting annoyed and I will have to take it off and put it on constantly. Nothing is coming up either and he sounds better as far as mucus.

leoscag
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Posts: 14
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Re: DMD Breathing Problems

Postby leoscag » Wed Mar 16, 2016 8:13 pm

I reset the alarm for 95 so if it goes to 94 it will ring.

leoscag
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Re: DMD Breathing Problems

Postby leoscag » Fri Mar 18, 2016 3:21 pm

Dear Dr Bach

I have a friend in California who has son with DMD. Her medical refuses to give her son a bi pap which he needs. She wants to know what she can do to convince her medical he needs one.

Michelle


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