Help Finding Nasal Pillows for My Young Daughter

[chunkyfrog]

For her machine--Duck tape, maybe Minions?

[palerider]

I saw that. Unfortunately I need a bi-level. (Which is not pink) oh well. (Shrug)

Who says you have to settle for the colors the company sells...

This is my S9:

[palerider]

I read somewhere why they don't do FFM on small children often and I forget the exact reason but I seem to remember a logical reason.

Something to do with pressing on growing jaws/teeth maybe? (wild guess there, that one is)

[babydinosnoreless]

Wow cool palerider. That looks awesome !

[threehappypenguins]

Thank you, pugsy, for looking for the star! On the bright side, she had an appointment at our local sleep clinic yesterday, and they lent to us a Fisher & Paykel nasal pillow mask, and it surprisingly had a good fit. My daughter didn't want to sleep with it, but we managed to bribe her with chocolate chips (she would get them in the morning if she slept with it). I'm not the bribing type parent, but I think in this sort of situation, it's okay. I checked her SD card in the morning, it she only slept with it for just under 4 hours total. I can see that it came off just after midnight, and then she put it back on again not long before she got up in the morning. Before she went to bed, she complained that there was "too much air." So I had to lower the minimum from 10 to 6. That's how much of a difference the nasal pillows made. But upon examination of the SD card, I could see that it kept maxing out at 12. The clinic won't allow me to put the max over 12. So she continued to get apnea episodes after it maxed out. And I think that's probably why the nasal pillows came off. It didn't stop her apnea episodes and so she still moved around a lot. They aren't as "secure" as the Wisp.

Also, fyi, the reason why pediatric face masks are not recommended, is because of vomiting. It can be very dangerous for a child if they vomit.

Janknitz, thanks for the tip about the Wisp! She is kind of a mouth breather all the time. Like her dad, her nose is perpetually plugged. We have even tried prescription nasal spray, and nothing has helped. I have even had her go dairy free. I think dairy free helped a little, but not quite enough. So she's back to eating dairy again.

[Snoregone Conclusion]

Wish it didn’t take so long for me to figure out, but I was perpetually congested to some degree along with other things, including having problems with dairy. Went wheat-free March of last year and that’s largely gone away, along with inflammation in general. It’s entirely possible to eat a nutritionally-balanced diet without wheat.

There are elements in wheat that don’t cause an allergic reaction until they’re being digested, and many different proteins it could be.

[threehappypenguins]

Wish it didn’t take so long for me to figure out, but I was perpetually congested to some degree along with other things, including having problems with dairy. Went wheat-free March of last year and that’s largely gone away, along with inflammation in general. It’s entirely possible to eat a nutritionally-balanced diet without wheat.

There are elements in wheat that don’t cause an allergic reaction until they’re being digested, and many different proteins it could be.

My husband has Celiac Disease, and we have suspected Celiac since my daughter was a toddler. We completely removed gluten from her diet several years ago, and a lot of stuff improved. But it's like there is still residual inflammation. She probably does have Celiac, but it's not confirmed. We had a family doctor who also has Celiac Disease, and she said that she agrees to keep her off the gluten.

[palerider]

Wow cool palerider. That looks awesome !

I wouldn't think that wrapping a air10 machine would be that difficult, nice simple curves... Same for the DS.

[Okie bipap]

And I want pink stuff. They need to make the dreamware ff masks pink!

When I learned my wife needed to get a machine, I contacted Karen at Padacheek, and had her make a bright pink hose cover and strap pads for her. We now have a pink side of the bed with pink hose cover and strap pads and a blue side of the bed with blue hose cover and strap pads.

[babydinosnoreless]

I'm going to start a new thread so as to not to take away from finding the little girl a proper mask. but I have questions.

[richp2304]

Pedi sleep tech here and your info is not correct we use what ever mask will work for patient to get the best pressure. Putting a nasal pillow on a mouth breather is a waste of time for the parent and the patient . We would have done several mask fitting before we would have the patient come into the lab for a titration. It is rare to put a cpap on a child unless they absolutely need it. Due to her being a mouth breather look at the dream wear by respironics and the f-30 by resmed.


Sent from my iPhone using Tapatalk

[Pugsy]

An adult FFM like the DreamWear is going to cover almost the entire face of a child even in the smallest size available.
Going to leak like crazy everywhere all the time. Might as well be only leaking part of the time with a nasal interface.
The DreamWear...even with small frame and cushion...I had to add padding to take up the slack and get it to half way seal and I am a grown woman....not a big woman but bigger than a 6 yr old. It was still big on me and could have been smaller.
So you have a source for a ped size FFM? Maybe you could to send one to Canada where OP lives.

Pedi sleep tech here and your info is not correct we use what ever mask will work for patient to get the best pressure. Putting a nasal pillow on a mouth breather is a waste of time for the parent and the patient . We would have done several mask fitting before we would have the patient come into the lab for a titration. It is rare to put a cpap on a child unless they absolutely need it. Due to her being a mouth breather look at the dream wear by respironics and the f-30 by resmed.

[threehappypenguins]

Pedi sleep tech here and your info is not correct we use what ever mask will work for patient to get the best pressure. Putting a nasal pillow on a mouth breather is a waste of time for the parent and the patient . We would have done several mask fitting before we would have the patient come into the lab for a titration. It is rare to put a cpap on a child unless they absolutely need it. Due to her being a mouth breather look at the dream wear by respironics and the f-30 by resmed.

I have been using a Fisher and Paykel nose pillow on her (adjustable straps), and it was amazing how much better she could breath. I had to lower the minimum pressure from 10 down to 5 because she was complaining it was too much air. I suppose the other thing I could do is raise the pressure some and turn back on the ramp, but have the ramp at a lower pressure (sleep specialist turned off the ramp because the nasal mask needed so much air, ramp was useless).

The sleep specialist also gave her a chin strap, and that has helped greatly. The main issue with the Fisher and Paykel is that it's quite big on her and she can knock it out of place easily. Also the nasal holes get pushed in easily. I'm hoping to maybe get my hands on a Swift FX (adjustable straps like the Fisher and Paykel) with the XS pillow and see how that works.

Like my husband, she is only a mouth breather because of nose congestion. But if her nose isn't congested (it almost always is), then she breathes through her nose. My husband is a mouth breather and uses the nasal pillows. He can't use the full mask or the nasal mask. He said it always felt like he couldn't get enough air, no matter how high the pressure. But the nasal pillows give direct air and open up his passages. It appears to be the same with my daughter.

The main issue now with my daughter (besides finding better pillows) is the max pressure isn't high enough. I went in there last night and there were no leaks, her mouth was closed, it was maxed out at 12.0, and she was still slightly snoring. This morning, I found an AHI of 15. But the sleep clinic won't put it past 12. So I want to get her into an overnight test to get the right settings. I know children normally get tonsils and adenoids removed, but I want that as a last resort. Her tonsils and adenoids are of average size, and she's never gotten an infection. The only reason CPAP isn't done on kids is because of compliance issues. My daughter is being compliant, so I don't see the issue with why this isn't a good course to take for her.

[Pugsy]

Refresh my memory please...which F & P nasal pillow mask are you now trying to use?

[threehappypenguins]

F & P Brevida XS-S.