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We have been wondering about this as well. Is it only used when a boy is not getting enough oxygen on a daily basis? Is it used to help out when he has a cold to clear the lungs more effectively? Is this something we should be looking into to have for my son in case he needs it? He is 15
Thanks,
Janine
We have been wondering about this as well. Is it only used when a boy is not getting enough oxygen on a daily basis? Is it used to help out when he has a cold to clear the lungs more effectively? Is this something we should be looking into to have for my son in case he needs it? He is 15
Thanks,
Janine
We just got the machine this Spring. I asked for it because I had read about Dr. Bach's work and the pulmonologist agreed. I am sure insurance has some kind of requirement to authorize payment for one. We had a sleep study over a year ago that indicated we needed the bi-pap at night. Pat is beginning to use the bi-pap during the day as well because he just feels better. He is beginning to retain CO2 because his breathing is not as effective as it should be. As I understand it, the cough assist expands the lungs and helps prevent pnuemonia and CO2 retention. Maybe someone else can provide more detailed information. Pat does not have a trach.
Janine said:We have been wondering about this as well. Is it only used when a boy is not getting enough oxygen on a daily basis? Is it used to help out when he has a cold to clear the lungs more effectively? Is this something we should be looking into to have for my son in case he needs it? He is 15
Thanks,
Janine
He sees the respiratory therapist (he has worked with John Bach) on a regular basis. At this time there is no decrease in his lung function. He does not get sick often. I just worry with flu season and of course H1N1 this year I am concerned about a cold or the flu developing into pneumonia.
Do you rent the cough assist? You pay that much each month, geez? Can you purchase these? Thank you for the information.
I do not pay for the device. The health insurance we carry does. We have both primary and the gateway which is provided to us due to the DMD from the government. If you have a letter of necessity you can almost get the device. Do you get the pneumonia shot? I get the flu shot every year but i was told to get the pneumonia shot this year. I think the pneumonia shot is every few years. I am also afraid of the H1N1. I am worried about even getting the shot when it comes. I know that in our lives... our cards were already dealt. I try my best to stay on top of things but as a mother of a child with DMD and not a carrier. I know that our lives were planned and the paths we go on were already planned. So that does somewhat keep me strait mentally... reminds me that things were not my fault etc... you know...
Janine said:He sees the respiratory therapist (he has worked with John Bach) on a regular basis. At this time there is no decrease in his lung function. He does not get sick often. I just worry with flu season and of course H1N1 this year I am concerned about a cold or the flu developing into pneumonia.
Do you rent the cough assist? You pay that much each month, geez? Can you purchase these? Thank you for the information.
ABSOLUTELY!!! MY son only received it because of a mucus clog. If he would not of had that. He would not have the machine. In return he would then end up at some point ill and admitted possibly needing a trach down the road. My son is always sick so i am not sure how that compares with your son. Maybe your son will have to get ill and then receive the machine. Our insurance covered the machine. It is $370 a month.
Here is the site info: www.jhemerson.com. Your MDA clinic doctor (usually a neurologist) can recommend a pulmonologist (lung specialist) or respiratory therapist. who works with people who have neuromuscular diseases. They will perform the test you will need to monitor your respiratory health.
Based on the results of these tests over time, your pulmonologist can plot the function of your respiratory system. When the numbers and physical exam show a decline, it may be time to initiate some form of ventilatory assistance to move more air into and out of the lungs.
By understanding the rate of decline in your breathing muscle function, with the help of your health care team , you can carefully consider decisions about the best form of assistance before a breathing crisis develops.
Periodic evaluations of respiratory status can assist the neurologist and pulmonary doctor in determing when to begin a particular treatment. Following a careful review of the physical examination and pulmonary function tests, an individual respiratory care plan can be put together for you.
The above information was copied out of a book i have. I thought it may be helpful information for you and others.
I hope this info leads you to the best possible care for your son.
mm
Janine said:We have been wondering about this as well. Is it only used when a boy is not getting enough oxygen on a daily basis? Is it used to help out when he has a cold to clear the lungs more effectively? Is this something we should be looking into to have for my son in case he needs it? He is 15
Thanks,
Janine
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