Newbie - 4 month old with Down syndrome on BiPAP

wessiesmomma · Post by **wessiesmomma** » Mon Sep 10, 2012 6:47 am

Hello!

I'm Adrienne from Pennsylvania. My son has recently started using a BiPAP at night and during naps. Because of his size, we're having a little trouble finding the perfect fit in a mask. It's either the head gear is too big or the mask is too wide.

Since my son has Ds, he has a very small nasal bridge. This poses a problem with gapping. Because of this, the mask is a little tight causing some breakdown. He's only been on this for a few days.

Any mask suggestions for my little man? The pixie is too big and the bubble is not FDA approved. He's on the gel now. Thank you!!

Pugsy · Post by **Pugsy** » Mon Sep 10, 2012 7:51 am

Hi. Welcome to the forum.
We don't have many pediatric OSA parents here but there is a forum especially for parents of children with OSA..... http://www.apneasupport.org/pediatric-s ... a-f14.html
Someone here may have some ideas for you (sorry but I don't), but in the meantime you might also checkout the other forum.
Good luck and give the little guy a hug and a kiss from me.

-tim · Post by **-tim** » Mon Sep 10, 2012 9:21 am

You don't have to use the headgear that comes with the mask. I use a Resmed mask and F&P headgear because it works for me. If your creative, you can even mix some of the other components as well.

Start with the rubber part of the mask that fits properly. You can use the soapy water trick of coating the mask with soapy water and it will bubble where it leaks. Use a kid safe bubble bath and make sure none of it gets in the kids eyes. Once you find how the mask needs to sit to prevent leaks, then try to adjust straps to provide that pressure. At 4 months the skull is still soft so consider as wide of a strap as you can find to lessen the pressure. You also need to make sure the headgear doesn't slip up or down causing more leaks.

A 4 mo old won't need the air flow that a standard adult 22 mm hose provides and that extra weight is an issue for a tiny kid. You may need to attach the hose to the headgear the same way as some of the nasal pillow systems do. I've played around with adapting a F&P Opus system to a resmed mask since the Opus has a gimbal and swivel which cuts way down on some of the forces that twist the mask and cause it to leak.

There are a number of masks now marketed towards women that have different headgear that might work better and keep in mind that you can use it upside down if it works better and you may need to add more velcro to it. You can also consider using two straps at once, one to hold the top of the mask were it needs to go and another to hold the bottom or the other strap where it needs to go.

Do you know anyone who can knit? I'm thinking something like winter hat with large spacing and a some points to attach a some velcro straps to hold the mask might be the best option.

chunkyfrog · Post by **chunkyfrog** » Mon Sep 10, 2012 9:28 am

Is a full face required? Otherwise; I wonder if swift FX XS pillows would work--forget the headgear,
use soft fabric to make itty bitty earloops.
(without any Bella parts (too big)--just attach the loops to the barrel of the pillows)
Prayers for your little angel.

msradar65 · Post by **msradar65** » Mon Sep 10, 2012 9:30 am

I would check with your local children's hospital and see what they use in the NICU and PICU for the little ones on CPAP treatment in the unit. They may have a mask the right size for him.

cherylgrrl · Post by **cherylgrrl** » Mon Sep 10, 2012 10:39 am

There is another cpap forum that might be a good resource to you, freecpapadvice.com. The moderator is a certified sleep technician and is very good about answering questions. I know he has been involved in fitting pediatric masks, and he might be able to provide some additional help finding the right mask or addressing fit issues. Good luck to you!

SleepingUgly · Post by **SleepingUgly** » Mon Sep 10, 2012 12:51 pm

In the past, I thought using nasal pillows was better for my kid than a mask that presses on his face, but I no longer view nasal pillows as benign. My then 8-year-old had a very, very minor sore from the pillows on his nose, which we immediately addressed, and it still nearly deformed the rim of his nostril permanently, which I just couldn't believe. I think you should stick with masks made for kids. I don't know enough about the ones for infants, though. As others said, you may need to check a website for parents like you, as practically everyone using CPAP here is an adult.

Good luck!

akcpapguy · Post by **akcpapguy** » Mon Sep 10, 2012 1:13 pm

Wessiesmomma,

What machine are you using currently to treat him??

Here is a link to Respironics brochure on their "hospital" pediatric masks. Some of these masks require a different exhalation valve to be used on home BiPAP systems. If I know which system you are using I could help you identify if you need to modify a "hospital" mask.

http://www.healthcare.philips.com/asset ... 208_12.pdf

msradar65 · Post by **msradar65** » Mon Sep 10, 2012 4:13 pm

I found this and thought it may help.

http://www.bipapforsma.com/page3.htm

Sir NoddinOff · Post by **Sir NoddinOff** » Mon Sep 10, 2012 4:33 pm

I have a hard time picturing how you give therapy to someone that young, but my prayers go out to you and the child for everyone's efforts to be successful.

Newbie - 4 month old with Down syndrome on BiPAP

Newbie - 4 month old with Down syndrome on BiPAP

Re: Newbie - 4 month old with Down syndrome on BiPAP

Re: Newbie - 4 month old with Down syndrome on BiPAP

Re: Newbie - 4 month old with Down syndrome on BiPAP

Re: Newbie - 4 month old with Down syndrome on BiPAP

Re: Newbie - 4 month old with Down syndrome on BiPAP

Re: Newbie - 4 month old with Down syndrome on BiPAP

Re: Newbie - 4 month old with Down syndrome on BiPAP

Re: Newbie - 4 month old with Down syndrome on BiPAP

Re: Newbie - 4 month old with Down syndrome on BiPAP