Hello Dear Parents

Are there cough assist devices that are not too costly?My son is now having problems clearing fluids from his lungs,and the models i find on the internet are going for thousands of dollars.Thank you.

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Wainaina - an ambu bag can be used for assisted cough 

Resuscitator bag: Effective to assist with breath stacking, to increase maximum inspiratory capacity prior to a cough. Various manufacturers (such as Ambu bag). Alternatives to achieve breath stacking are: glossopharyngeal breathing (GPB), or the use of a volume ventilator. - See more at: http://www.parentprojectmd.org/site/PageServer?pagename=Care_physic...

Dear Kathi

Thank you so much for the info.It is good to hear there are so many options to consider,and i am hopeful that i will get a good one for my boy.Thanks again and have a great week.Regards

Wainaina, my son is in a pediatric breath stacking study right now here in Canada, as apparently it is quite widely used for older patients with DMD, but no one has studied whether starting it earlier could help prevent or delay respiratory problems. It is planned as a 2 year study, and they will take a few PFTs. We use the ambu bag twice a day, it only takes a few minutes. He is 14.5 years now, and had one cold this winter, and just observationally, I found on the 3 days the cold had settled in his chest, the bag caused him to cough (which it normally doesn't), so I consider that a good thing. 

Time will tell.

Andrea

Hello Andrea

I am learning new things as i have not read much on the respiratory difficulties arising from DMD.If the ambu bag is good it would be a good item to try with my son.Let me visit our GP and get more info on how to use.If it will help keep away the problems likely to arise from accumulated fluids in the lungs it would be really good.Thank you for your advice and have a great day.Warm regards to your family.

My son needs these things as well. his lung function is low so it is hard for him to cough enough to matter, we got a script for a incentive sparumter and a accapella machine. but the medical supply place wouldnt even try to get my insurance to cover it. so now in stuck and he is only exhaling at 35% and inhaling at 65%. what do i do?

If your son has a weak cough you need the cough assist.  If your son gets a cold and cant cough up his secretion he will get pneumonia.  You need to contact your dr to get a script with a letter explaining your sons needs.

Andrea - 

could you explain to everyone how you use the Ambu bag?  while everyone cannot get a cough assist, everyone can get an Ambu bag.  

Thanks~

Kathi



Andrea Cleary said:

Wainaina, my son is in a pediatric breath stacking study right now here in Canada, as apparently it is quite widely used for older patients with DMD, but no one has studied whether starting it earlier could help prevent or delay respiratory problems. It is planned as a 2 year study, and they will take a few PFTs. We use the ambu bag twice a day, it only takes a few minutes. He is 14.5 years now, and had one cold this winter, and just observationally, I found on the 3 days the cold had settled in his chest, the bag caused him to cough (which it normally doesn't), so I consider that a good thing. 

Time will tell.

Andrea

My son had pneumonia in 2012.  His cough was weak.  The cough assist provides enough force in and out to bring up the secretions down in the bottom of lungs. I have an Ambu bag and when my son was in the hospital with pneumonia I don't see how it would help.  I use the Ambu bag for therapy.  I don't understand the issue of not being able to get a cough assist.  The dr needs to be educated and write the necessary script.

 wainaina muiruri  is from Kenya, it may not be that easy for him to get a cough assist, but I hope he can. I was only mentioning the ambu bag as possible prevention and exercise. Of course everyone who needs one should be able to get a cough assist.

From the page http://www.cheori.org/en/researchers?id=58&qa=1 Breath stacking or lung volume recruitment

What’s next?
We’re looking at breath-stacking exercises called “lung volume recruitment” for children and teens with Duchenne Muscular Dystrophy and how that impacts loss of lung function over time. Last year we published retrospective data that showed after you introduce breath-stacking there’s a 90% reduction in the rate of decline of lung function! Now we’re going to test this in randomized control trials with children across Canada.


Hi Kathy,

The ambubag has a "black box'' apparatus attached to record the sessions, so just have to make sure we see a flashing green LED to ensure the batteries are still working. Simon uses the mask with inflated ring, but a mouthpiece can be used, with or without nose clip.

Child should be as upright as possible. First they breath out completely, then get a good seal with the bag and breath in each time the caregiver squeezes the bag, somewhere between 3-5 times, until the child feels they can not take in anymore air into their lungs (he raises his hand to signal us). There needs to be minimal air leakage. They should hold the air in for a few seconds and then cough forcefully out. This procedure gets repeated 3-5 times, and we do it twice a day. 


http://www.ncbi.nlm.nih.gov/pubmed/22421625 The above study was only for 22 individuals with DMD aged 19.6 +/- 2.4 yrs. That is why they want to study it further in 110 younger kids.

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