mask sizing

HeatherN · Post by **HeatherN** » Sat Jul 14, 2007 5:13 am

How do you know what size mask you need? I am asking because when Hannah recieved her mask, the DME never measured her or even had her try it on. When we were at the sleep lab the respritory therapist had her try a mask on and then after her sleep study the sleep DR ordered her a size small full face mask. I thought it was fine but have noticed that when it leaks, it is from around the chin area. When I adjust it it will go back and forth between chin leaks and leaking at the nose area into her eyes. So I guess I am wondering if she needs the petite size full face mask. Last night I was so tired and wanted to go to bed early. Hannah would start having a leak, I would go adjust it and then just as I was drifting off to sleep- another leak! It was so annoying.We have an appointmant on Wed with her sleep DR but wanted to know what you all think.Is it all just trial and error?

Slinky · Post by **Slinky** » Sat Jul 14, 2007 5:53 am

Unfortunately, despite measurements & whatever else one can think of to determine the mask size needed by an individual the way you've found that Hannah's present mask is a skosh too large (long) is the way most of us end up finding out whether a mask really does fit or not. By using it for several nights. Since it has been less than 30 days you should be able to exchange it and hopefully they do make a Petite in that mask.

CarrieS · Post by **CarrieS** » Sat Jul 14, 2007 11:12 am

Im suprised they just tried one on and sent you on your way. Do you have a DME? I had leak issues with my first mask too, I went back in 1 week later and did not leave until they gave me one that didnt leak. I put about 7 masks and pillow systems in numerous sizes and tapped and lightly pushed the sides to simulate rolling on my pillow and I was stubborn until I found one that didnt leak easily. I ended up with the virtually leak proof Nasal Aire II - basically cant leak, I dont have so much mask covering my face either, very few straps, love it - the trade? it goes up your nose some and some arent comfortable with that idea - I havent had any discomfort with it at all though a little KY and its comfy as can be. Anyhow make sure when yougo in you test it good and dont leave until you have what works best, try stuff out and play around, you have to spend about 1/3 of your life with it on you deserve more then the first thing they trhow on you (her.) Hope you find something as comfy for her as I have for myself.

HeatherN · Post by **HeatherN** » Sat Jul 14, 2007 1:49 pm

Thanks, We are stuck with the mask because it has been over the 30 days. She has been using the mask for about two months. I thought it was fine, and do have to say it does not leak every night(last night was just a particularly bad night)It does take several minutes of adjusting when we initially put it on at night though.I never thought about it being a smidge too big for her until last night when it was one leak after another.The DME is the one that never even had her try it on at the office. The DME just showed us the CPAP machine itself and gave us the mask in the bag. Seems like she would have seen if it fit right. Oh well, will talk to her Dr later this week and see if they can look at it.

socknitster · Post by **socknitster** » Sun Jul 15, 2007 10:03 pm

I would think if your doctor writes an order of medical necessity, you would have to be able to get a new one.

jen

Guest · Post by **Guest** » Mon Jul 16, 2007 9:22 am

Posted: Sun Jul 15, 2007 11:03 pm Post subject:

--------------------------------------------------------------------------------

I would think if your doctor writes an order of medical necessity, you would have to be able to get a new one.

jen

I think Jens right - the doc should be able to, you may even want to call your insurance company and ask them what their policy is for a mask that doesnt fit. I cant imagine they just make you suffer. If its a NEED which it is then it should be covered so long as a doc makes a written order.

socknitster · Post by **socknitster** » Mon Jul 16, 2007 10:01 am

I'm curious about Hannah and how you found out about her apnea and how severe it is. I have severe apnea and my 4 year old son MAY be exhibiting signs but my husband thinks I'm crazy and that he is just a very active little boy who gets tired. I'm bringing it up with his ped in Aug. I just don't think it would hurt anyone for him to get a sleep study!

Forgive me, if you have posted this b4 and just direct me to another thread where you discussed this if you would!

Jen

Guest · Post by **Guest** » Mon Jul 16, 2007 10:08 am

I believe I would be calling the companies (ResMed, Respironics, etc.) and asking about what they've got or what they can do to help in the way of small children. SOMEBODY has to be making them in those sizes. I'm sure hospitals get them. AND/OR......call a local hospital and see what/who they'd recommend.

Den

socknitster · Post by **socknitster** » Mon Jul 16, 2007 10:19 am

Hans Rudolph makes a full face in very small sizes intended for kids 10 and up--I think. Maybe it is 8. I'd have to go hunt down the literature.

Jen

HeatherN · Post by **HeatherN** » Mon Jul 16, 2007 1:21 pm

Thanks all, I have lots of ideas for the sleep DR tomorrow now!

Jen, My husband has been a hose head for about six years.He always snored like a freight train(in fact all his friends call him "buzzsaw") and with him I got sick of sticking a mirror under his nose to make sure he really was alive. He got tested and sure enough. When Hannah was about four I noticed she snored quite loudly and she has always been a kid that moves a lot when she sleeps. We went to her ENT about it and did tonsil and adnoid surgery. She also had serious chronic sinus issues for years. Her snoring dissapeared for a while. She also finally has sinus surgery at age 7. About six months after her sinus surgery I noticed her snoring again. I started making a point of watching her sleep and noticed she definitly was having full on apneas. I got her back into the ENT and he sent us for a sleep study based on symtoms.Sure enough- she has moderate to severe sleep apnea.(did want to add that they use a different scoring method than adults though)Since she already had T&A surgery our next option was CPAP. I thought there would be no way she could do it but after about a three week adjustment period she is now using her CPAP all night every night and has been doing so for the last month.I think the biggest issue is getting a DR to take you seriously. So many DR's know nothing about sleep apnea in kids. Hannah also has Down syndrome and that increases her risk for OSA based on the fact that she has low muscle tone. Our ENT is wonderful and very knowledgable thankfully. It's kind of funny though because her pediatrician told me he has never treated a child with OSA before and I have been kind of educating him about it! With Hannah it has been difficult to know if CPAP therapy is working due to her developmental delays but I have noticed she has more energy, no more dark circles under her eyes and a lot of people have commented that her speech is much clearer and much more descriptive than before.If you have suspicions that your son may have OSA I would push for a study. It might be hard to get a DR to listen to you but it would give you piece of mind. I have also heard a lot of
people say that kids don't always exhibit the classic symptoms, they just have issues related to lack of sleep. I think a lot of kids get misdiagnosed with ADHD and other issues that could be solved with CPAP.What I am findng is there is not much info out there for kids with OSA. I have been doing a lot of searching for people with kids on CPAP and have only found one other little girl so far. I am so glad I found this forum but do find it a bit different at times being that she is a child.If you do decide to do a study I would be happy to PM you pictures of Hannah's studies so your son might be able to know what to expect.Oh yeah forgot to add that Hannah's initial study revealed she has an average of eleven obstructive apneas per hour and she desats to about 86%. She never entered REM sleep at all. They also diagnosed periodic leg movents. She has a lot of spontaneous arousals too. The other issue was, she was having tachycardia and at times they noted PVC's on the EKG. This worries me a bit but may be related to the fact that she has had a previous open heart surgery.Keep us posted, and let me know if I can help. Sorry to write a book!

socknitster · Post by **socknitster** » Mon Jul 16, 2007 5:43 pm

Thank you, thank you for your helpful reply. My boys only symptom is being tired all the time since birth. Other than that I would say he has some symptoms of ADHD too--even his Montessori preschool teacher noticed that and commented on his need to "move" and difficulty staying focused. Now, I know he is only 4 and well, big deal, right?

I know I shouldn't compare him to other kids his age, but the only dimension he seems to be lacking in his development is being able to stay on task. Other kids his age get abosorbed in imaginitive play and he. . . just. . . doesn't. He plays of course, but not the same kind of play I notice in other kids. He just leaps from thing to thing and is never interested in one thing for long.

Anyway, I'll be bringing it up with his ped who is SUPER COOL, so I have no doubt he will fulfill my wish for a sleep study. What could it hurt? Just to ease my mind and potentially enrich his life!

I'm glad your girl is doing so well! She sounds like a delightful child. I think kids are so adaptable, cpap might be a struggle at first, but they can get used to this kind of stuff. Maybe even having tonsils and adenoids out would be enough if my worst fears are realized.

Thank you again--you really are doing your family quite a service by spending time here!

Jen

HeatherN · Post by **HeatherN** » Tue Jul 17, 2007 5:54 am

Jen, thank you , you are so sweet. I feel bad sometimes, like I don't have a lot to contribute because I am not the one on CPAP and I am so new to this. BUt I am learning tons here and have gotten the answers to so many of my questions. I love this forum! I hope you get some answers with your son, at least piece of mind.By the way, I also have a four year old son. They certainly do give you gray hairs don't they???

socknitster · Post by **socknitster** » Tue Jul 17, 2007 8:05 am

LOL!

I don't know if the grey hairs are from undiagnosed osa going on for 10 years or my rambunctious son, but neither one is good for the tresses!

jen