My 11 year old, Nathan, just started using a Bipap machine at night. He is having difficulty adjusting to it, and it makes for a miserable night of sleep for all. Anyone have suggestions on making this adjustment easier?

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One thing that might help is to gradually introduce the machine. When our son started on a VPAP machine several years ago we had him put on the mask (or whatever interface you are using) while he was still in his chair and he watched television or read, etc. Then we had him wear the mask in bed for a couple of hours until he worked up to wearing it all night with no problems. (Only took a couple of days if I remember correctly, it has been awhile) The mask /interface should be comfortable on their face but will need periodic adjustment for leaks, etc. Getting used to the machince is an adjustment for them but once they get over the hurdle they will not want to go to bed without it. Be patient and gradually up the time they use the BPAP machine. It should only take a week or so...at the most. It will make a huge difference in the long run on his daily life. Our Respiratory therapist is quite knowledgable in this area and has spoken at several of the PPMD conferences. If you would like to talk to him via email I could give you his email address.
Hang in there it will work out,
Katherine
Hi there, i was just reading your emails, i am in South Africa, and fine it very hard to find someone to understand the settings on our sons machine, could i please have your therapists emails. I was also wondering, is your sons bipap set where he triggars the breaths, or not and when would this be necessary,
Kind regards
thanks so much
Maxine
We found that taking the ramp off the VPap made Mitchells life a lot easier, as he felt like he was "suffocating" whilst the machine built up to the correct pressures (and his ramp was set for 15 mins which is a fair old time).

Mitchell would fight the whole time trying to breathe, but being restricted by the ramp effect. Now he just goes straight into his normal settings, and is extremely happy with the whole situation - now he wont lie down now without his mask on, and sleeps for up to 12 hours when he is really exhausted......

Do you have a vaporiser on the VPap? If so try turning it off or turning it down, as we find that we only use when necessary as the moisture builds in the mask and makes a whistling sound. This keeps waking Mitchell up frequently and makes for a bad nights sleep..... (on the flip side of course if you don't use the vaporiser when the air is hot and dry from a heater the tear ducts object and crust up his eyes!)

Good Luck and hang in there. I think the Vpap was harder for us as parents than it was for Mitchell as it got in the way of nighttime kisses and was a constant reminder all night that our little boy had Duchenne.......I also thought it would probably signal the end of sleepovers, but Mitchell has no problems laying there with his mask on while his mates sleep over, and being kids they ask a few questions and then just get on with it.

The biggest upside to using VPap was that Mitchell actually gained some function in his arms when he started using the VPap, and the gain lasted for about 18months before he started to deteriorate again. It wont happen with every child, but just the overall increase in well being that comes with using the VPap is a huge bonus.

All things considered, have a happy New year and keep smiling (it makes people wonder what you're up to!)

Jules
My son who is 17 with duchenne struggled with this in the past year to. I understand the sleepless nights. All the beeping alarms going off. Hang in there! What we figured out is two things. First the mask makes such a difference, the Respironics Optilife headgear and mask is great. The headgear is a soft comfortable strap and the mask goes just over his nose and under his chin. The second thing is my son's doctor turned the pressure on his BIPAP with AVAPS machine down and added an oxygen machine straight in to the bipap machine. Then he was able to handle the lower pressure and would get enough oxygen when sleeping. He was so uncomfortable with the suffocating feeling he was getting before this adjustment. Maybe this would help him to. Our son wouldn't want to sleep without it now. Good luck,ask more questions if you would like to!
Laurie
We had the same problem when my son first started using a BIPAP machine. We finally gave up until we talked to his Dr. who suggested we try a nasal pillow. I don't know how to describe it but instead of being a mask that covers the nose; it is smaller and sticks in the end of the nostrils; looks so much more comfortable and once we got it; he had no problem wearing it and so could feel the difference in how he felt after getting a good night sleep with the bipap.
You explained it so much better then I did. Nasal pillow is what I should have said rather than a mask. My son also found that this is by far the most comfortable.

Holly Bailey said:
We had the same problem when my son first started using a BIPAP machine. We finally gave up until we talked to his Dr. who suggested we try a nasal pillow. I don't know how to describe it but instead of being a mask that covers the nose; it is smaller and sticks in the end of the nostrils; looks so much more comfortable and once we got it; he had no problem wearing it and so could feel the difference in how he felt after getting a good night sleep with the bipap.
Laurie Hoovestol said:
You explained it so much better then I did. Nasal pillow is what I should have said rather than a mask. My son also found that this is by far the most comfortable.

Holly Bailey said:
We had the same problem when my son first started using a BIPAP machine. We finally gave up until we talked to his Dr. who suggested we try a nasal pillow. I don't know how to describe it but instead of being a mask that covers the nose; it is smaller and sticks in the end of the nostrils; looks so much more comfortable and once we got it; he had no problem wearing it and so could feel the difference in how he felt after getting a good night sleep with the bipap.
Hello: My 22 year old son Ismael uses the Bipap 24/7 but he uses the Optilife Mask from Respironics and it was more easier to use and get use to for him. You can always call your pulmonologist and the respiratory therapists at the sleep lab for help we did when he was swallowing excessive air and the doctor lowered his settings and he is being fine using it ever since. You need to stress the fact that this machine will benefict him a great deal

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