6 year old new to CPAP, mask help

Hello! My 6 year old daughter just received her CPAP machine today, but we have a problem! Her mask really doesn't fit well, even the RT agrees. Ella is 6 and has Down syndrome, so not only is she physically smaller than a typical 6 year old but her facial features are even smaller, especially her nose. She requires a full face mask because she breathes mostly out of her mouth. During her sleep study we used a small full face mask but the seal kept breaking because it was just too big, but it was the smallest the sleep center had. So the RT at the med company today tried every small mask he had, even trying to use a large Adult nose mask as a full face mask (but that was just a bit too small.) Does anyone know of any pediatric sized masks? Ella is the first person under the age of 18 that this company has worked with. Thank you for any help!!!!!

http://www.healthcare.philips.com/main/ ... tricmasks/

Respironics mentions the FitLife Small as being kid sized but unsure if even it would be small enough.

Seems to be a few kid size nasal masks but not many FFM. The FitLife seems to be the only one I can find.

Was it SleepyMagnoliaSt that has a daughter who has started cpap recently? I'm sure she found someone who had childrens masks.

I work as a Pedi RT at a large children's hospital. I have to say that mask-patient interface is always our biggest challenge, when it comes to providing non-invasive ventilation to our little patients. This is a difficult situation but not impossible and believe it or not, the options are a million times better than they were a few years ago. Companies that make CPAP mask do not want to invest the time or money it takes to get a pediatric mask FDA approved. There is a limited market for these masks, compared to the adult market, that they really don't make their money back. Some of the masks that have come out on the market recently are a result of pedi RT's/MD's complaining, encouraging and even demanding that these companies do a better job.

Let's start with the basics first. I need to know what machine your daughter will be using and what type of therapy she was prescribed. What settings were ordered for her? Is she being treated for obstructive apnea, complex apnea or respiratory insufficiency? Will she be wearing this only at night or round the clock interface?

Now to your little Ella. Does she mind to wear a mask or is she fairly compliant? Will she be sleeping where someone will be monitoring her or is she in her own room? Is she prone to digestive issues such as nausea, episodes of vomiting, etc. Does Ella have other medical issues such as cardiac issues or immune disorders?

I know it may seem that Ella needs to use a full face mask but we rarely use them. Even in the hospital setting, we tend to use them in the ICU setting where the child is constantly monitored. We are always concerned that a child could have an emesis while wearing the mask and not be able to remove it on their own. Many children sleep deeply and will not wake up fast enough to prevent an aspiration pneumonia. The full face masks make more contact with the face which increases irritation and skin breakdown. The larger surface area also makes the mask harder to seal.

We find most kids will adapt to a nasal mask and learn to keep their mouths closed. For kids that have a really hard time, we utilize a chin strap. The CPAP/BiPAP machines we use in the hospital can compensate for fairly large leaks. Some of these machines are used in the home too. Many of our patients, babies especially, never close their mouths and are obligate mouth breathers but this does not prevent us from delivering effective non-invasive ventilation.

Now to masks that we have the best luck with. The nasal mask that works well, especially with children with Down's Syndrome, is the Profile Lite by Philips-Respironics. You could buy a larger Profile Lite and use it as a full face mask. The blue gel is very good at molding to the face to stop leaks.

The MiniMe and Pixi are two other good option.

Many kids do well with the Swift FX for Her using the XS pillows. We sometimes have to do minor surgery on the head gear to make it small enough for the child's head but that is usually with babies or toddlers. Resmed also offers the Mirage Micro in a kid's size, the Mirage Kidsta and the above mentioned Pixi.

The Fisher Paykel FlexiFit is another nasal mask option.

The Philips-Respironics and Resmed websites have pages discussing their Pediatric masks.


It may be helpful if the respiratory therapist that was working with Ella could give you a list of each mask along with size that he tried. It would be easier to figure out what else could be an option. Do you have access to the local children's hospital? You may be able to work with their Pulmonary or Respiratory Care Department. They would have more experience than the DME and a better selection of masks. Hope this helps. I did try to give you the links to all the masks but I wasn't able to post my response without removing the links. Sorry.

Hi!

Ella has been given the ResMed CPAP machine. It is set to change between levels 5-7 automatically. She was given the ResMed Quattro FX for Her, size small, full face mask. I believe that she is being treated for obstructive sleep apnea....she was diagnosed with that at age 2 and then had her tonsils and adenoids removed at which time it helped. She is a horribly restless sleeper, sleeping anywhere from 12-15 hours a night and still being tired all day, and as of about 4 months ago she began snoring again. They said that during the 1st sleep study (this year's) that she had 14 apnea episodes an hour and her O2 hovered around 87%. She will only be wearing the mask while she sleeps, and she sleeps in her own room on her own. She has only worn the mask/CPAP during her sleep study in which she wore it the entire night without messing with it....but the seal broke on it several times that night, because it is a little too big on her, so I kept getting up and adjusting it. We did try a nasal mask first but as soon as they would turn on the air she would freak out and rip it off and kept saying "can't breath can't breath." The tech at the sleep center said it was most likely due to the forced air going in her nose and coming out her mouth.

Medical issues...she has Down syndrome so with that she has very low tone especially when she is sleeping, I think she will always breathe out of her mouth. She had a PDA in her heart that was repaired when she was 2. She also has Graves Disease, which she takes 2 medications to control. She has never vomited....ever. She has had 5 sets of tubes in her ears and 3 eye surgeries.

We do have a children's hospital and that is a great idea to contact them!

I can't figure out how to put a picture on here but I have a link to my blog, and the day that she had the 2nd sleepstudy to show the size of the mask. It CAN get a good seal but any movement seems to slide it up or down and break the seal. Ok..can't put the link but if you go to 365hunterandella(dot)BlogSpot(dot)com and then look at June 1st of 2013 you will see the pics!

I don't know what to tell you about a full face mask for a kid. All my experience was with nasal masks + chinstrap. If you decide at some point to try a nasal mask, I'd recommend the Micro. It comes in a Kids size that includes a small headgear. The Pixie is very small. You'd have to try it to see if it fits, but I felt it was more appropriate for a toddler. I don't know what's involved in using a nasal mask as a full face mask because a nasal mask is built with the assumption that you can open your mouth if need be, and a full face mask is not. I would be nervous about a nasal mask as a full face mask. At one point my son was unhooking the mask from the hose and failing to remember to rehook it, thereby sleeping with no air coming in other than what was coming in through the openings to the mask...

To the peds RT: Be very careful with nasal pillows and kids. I wanted my kid on nasal pillows because I was worried about the nasal mask putting pressure on his face and causing changes. Well, the Swift FX made a tiny, seemingly insignificant sore in his nostril that I immediately addressed...nevertheless, it almost permanently changed the shape of his nostril, creating a small divot that lingered months and nearly stayed.

Great. Thanks for the extra information. I went to your blog and I have to say your kids are adorable. Ella is a little doll and you are doing an amazing job. She looks so happy and very engaged.

Now, to the mask issue. It appears that a nasal mask is just not an option for Ella so we will have to work with the full face masks that are commercially available. I am very happy that she is not prone to vomiting. I looked at the photo of Ella wearing the Quattro FX and the fit is not horrible. It does appears the head gear is a little big and it may help if you can alter it to fit her better. Are you a good seamstress or do you know someone who is? We frequently have to alter head gear to fit our pedi patients. We usually shorten the straps by cutting a piece out and then using a Serger sewing machine to attach the ends back together so there is not a big lump. We find it almost impossible to get a mask to seal well if the head gear is too big.

Another thing that may help is to orient the hose along the side of Ella's head gear and up over her head. This can be done with a velcro strap, some string, pony tail holder or ribbon. The Quattro has a lot of weight towards the front of the mask and with the hose hanging down, it wants to pull the mask away from the face. This mask utilizes the bridge of the nose to maintain its position on the face but Ella's nose and bridge are too small to do this. Buying or making some sort of hose holder to keep the hose suspended will help keep the mask in place,too.

Another mask you may want to try instead of the Quattro is the Amara because it is one of the smallest available. It comes in a Petite size which is one size smaller than the Small. The ComfortGel full face mask is another option as gel mask are often better at sealing leaks but the smallest size is a small.

As far as using a nasal mask as a full face mask, we always insert an anti-asphyxia valve between the mask and the hose. This is the very same valve that is built into most full face masks. I am sure the RT working with Ella would have been fully aware of this and would have provided the valve. This valve allows the patient to breathe in air from the room if the machine stops working, for some reason.

Good luck and let me know if there is anything else I can help you with. Did Ella wear her CPAP last night? If so, how did she do?

To SleepingUgly: Thanks for the pointer. We are vigilant about the condition of our patient's skin and nose while they are in our care. All the patients are given a "CPAP" break every 4 hours so we can assess their nose, suction, apply Aquaphor, and massage the nose. We use an otoscope and look into their nostrils to look for breakdown or abrasions. Despite our best efforts, we do experience issues with skin integrity especially at the bridge and on the forehesd. Our patients are sick with compromised nutrition, immune systems, cardio-respiratory status, poor perfusion states, etc. Their skin breaks down so much faster than a well person. Some of our kids are on non-invasive ventilation 24/7, in or out of the hospital, except for their CPAP breaks. When a child has to wear a mask all the time, it gets even harder to protect their skin so we use the masks that work best for the patient. We frequently alternate between 2 different mask to change pressure points on the face. In small children and infants, we know that wearing a mask will remodel the face and change the way their face will look. The less a mask touches the face, the less remodeling the patient has,

The Quattro FX was too large for me, and I'm an adult (frog, that is )
Even the regular Quattro has an extra small, which is too small for me, and might come closer that what you have been given.
It would be awesome if a fabric mask could be made in her size, but my impression is that Circadiance is a small company, without the resources of the larger companies.
I would seriously consider using a mask liner--even a home made one, to protect her skin.

You've gotten some great responses here!

I'm not generally a fan of the American Sleep Apnea Society, but their forum has a pediatric section were you can talk to other parents of young children on cpap, I'm sure many of them have Downs and other issues with facial dysmorphisms, low tone, etc. I've seen some really good info on that section.

Try the small fit life. Most full face masks are not pediatric approved for FDA use.

Soooooo....the first night Ella wore the CPAP here at home it went great! We got it fitted on her fairly easy with only some minor adjusting and she wore it for 11 hours and 18 minutes and woke up happy! The second night it took us a while to get the mask fitted on her face without leaking air around the chin and nose, but we got it. When I got her up in the morning the mask was down kind of around her mouth and chin, not over the nose. Tonight we spent 30 minutes trying to get it to work. The pillow around the nose would leak a little bit of air and once the pressure got up to it's minimum it would blow out the pillow and blow air into her eyes...which would make her freak out. She cried, I cried and now she is sleeping without it. The RT called from the company today to ask how it was going and I told him about last night and his response was basically that's all we got and it will have to work. I'm so frustrated. I just want my kid to sleep well. Guess I will be calling the med company again tomorrow as well as the sleep center

Pekoepup - thanks!!! They are pretty great kids and Ella really is amazing : )

Here is a suggestion, and I don't know if someone else has suggested this yet, but has a large or bigger nasal mask been tried? Don't use it as a nasal mask, but try using it as a full face. It might work.

Guess that some one did suggest it.

fbkspeach wrote:I'm so frustrated. I just want my kid to sleep well.

It's maddening, isn't it? Have you tried Pekoepup's suggestions?