I need help!

[HeatherN]

Hello all, I hope you will be kind to a newbie! I will give you a little background on my situation and then hopefully you can help me with a couple of questions. I do not have apnea. My husband does-he has been sucessfully(for the most part) using CPAP for about five years. My daughter Hannah who is eight years old was recently diagnosed with sleep apnea. So far we have gone for sleep study #1 where the diagnosis was made and we have a second sleep study scheduled to do the titration. I have been trying to read all I can, and did read many of the FAQ section and such but I am finding a little overwhelmed and confused. I want to go into the study and know what to ask for. I believe my husband has a standard CPAP and it seems like there are so many options to choose from and have a feeling they will try to stick us with the basic machine and mask. Here are my concerns: Hannah has Down syndrome. She is pretty agreeable and functions pretty well but can't always communicate exactly what is bothering her. She can tell me if something hurts but is not very descriptive. She has had a previous sinus surgery and is frequently congested.I am not certain if she is a mouth breather. they gave us a respironics comfort gel mask(petite) to get used to at home before the titration. I was thinking of asking for a full face mask but have concerns that if she vomits she could aspirate.Should I worry about that? Also we are an hour away from the sleep lab and DR. Is there a particular machine I should try to get so that we wont have to make so many visits? I have been reading about software but am pretty clueless in that department.I guess I am worried we will get the equiptment and then I will find out I should have gone in a different direction and be stuck with it. Any advice would be appreciated. Thanks so much!

[dieselgal]

Actually there is another forum called apnea support that most of us also visit. They have a section regarding pediatric apnea. Maybe that would help!
The link is below.
http://www.apneasupport.org/index.php?s ... f7f81407bf

[HeatherN]

Thnaks for the advice. I am actually a frequent visiter there too. I like this forum however because it is faster moving!

[Linda3032]

Heather, I had a big long post written out and I lost it (Linda hits herself in the head). I hate that you have yet another of life's complications on your plate. It seems to me like it's already pretty full. Please ask questions and we will help in any way we can.

Anyway, I think you should call the sleep center and ask them to have a petite full face mask on hand. Because due to her congestion, I think Hannah probably will need one.

And, depending on her titration pressure and needs, I definitely think you should ask for an Auto machine. Either a regular Auto, or an Auto Bi-level. Because an Auto will allow you to home-titrate her in later years, rather than her having to go through sleep studies often.

I also think you should "demand" that the doctor include software in the prescription. You are her primary caregiver, and you need to know if her therapy is working. Especially so since Hannah can't tell you how she feels. Your insurance company should pay for the software based on this need.

With home evaluation via the Auto and the software, you will be on top of her therapy. I would imagine that as she grows, her pressure needs will change and you will be able to see that on the software reports.

It's hard to recommend machines at this point -- other than something Auto with software. I'm a Respironics admirer, so I would say a Respironics M Series Auto or a M Series BIPAP Auto with BiFlex. And the only reason I mention BiPap/Bi-level is because you won't know her later needs or complications (such as aerophagia -- swallowing air and hurting her stomach). Here is a site with info:

https://www.cpap.com/productpage-bundle.php?BundleID=46

Hope that info helps a little. Please let us know how her sleep study goes.

[snoregirl]

I have something to add to Linda's post with which I agree.

I would be wary of a nasal mask on an 8 year old with Downs. Many, many of use mouth breath (or mouth leak), and your child may not be able to communicate this well. Some full functioning adults can't figure out if they are having this problem and what the terrible dry mouth (to the point that their tongue sticking to the inside of the mouth...) is, so how could you expect your daughter to.

Also, the first time you hook up to a nasal (in my own personal experience) it is likely that the air will rush in the nose and try to come right back out the mouth and the person feels like they can't breath. Hannah may be lucky and not have this happen but it paniced me at my titration study, even though now I use a nasal pillow.

What I am saying is if she is agreeable to a ff mask it might be better.

As for vomiting into it, you have to figure out if that is a real issue vs. trying to keep her mouth closed with a nasal mask and stop mouth leakage.

Have them try both and you as her parent know her best and can see what is going on by her reactions.

[Catnapper]

There used to be a person (rusty nail) who posted here who had a young son who had sleep apnea. If I recall correctly there was a worry about the pressure of the mask causing the child's face to risk becoming deformed. She had another kind of monitor for him. I really don't remember much about the issue because it did not apply to me. I did want to mention it in case there is a risk for your daughter. Perhaps someone who knows more about this will offer some help. I also remember seeing a child's machine that was designed as well as decorated for kids. The whole set-up looked different than the ones for adults, so maybe that is how the risk has been dealt with - in different design features. Also, rusty nail was in Germany, so she had different medical care.

I wish you the best in helping your family.

Catnapper

[kavanaugh1950]

LINDA, GREAT ADVICE. I AGREE ON THE FULL FACE MASK AS MOST DOWN SYNDROME CHILDREN HAVE LARGER TONGUES AND MOUTH BREATHE. MOM, GOOD LUCK. WITH A CARING AND CONCERNED PARENT LIKE YOU, SHE SHOULD DO VERY WELL. HAVE HER WEAR THE MASK FOR SHORT PERIODS OF TIME DURING THE DAY TO GET USED TO IT AND SO IT WON'T BE SO SCARY TO HER AND LET HER DECORATE IT IF SHE WANTS. YOU CAN GET A PRETTY FLEECE HOSE COVER IN ANIMAL PRINTS AND ALSO PAD A CHEEKS FOR ADDED COMFORT. KEEP US POSTED. PAT

[HeatherN]

Thank you all for some really great advice. I appreciate that you took the time to help. I feel much better about knowing what to ask for when we go back. I will keep you posted! I am sure I will have lots more questions once we actually get her set up!

[KansasRT]

Almost 100% of the children I have set up on CPAP have been given an auto titrating machine. You can never be sure of a setting or how often a childs needs may change. The mask that is marketed for children is similar to a Remed Mirage Vista mask. It is called the Kidsta I think. The most important thing with children is to let them experience the CPAP without the "bedtime pressure" we all put on them . I have the children wear the CPAP while watching TV, coloring etc. Most children adjust better than we think.