Newbie Mom Suggestions

Was just looking for some suggestions as to making CPAP work for a little guy...

I have a 4 year old son who is diagnosed with OSA with an 11.7% AHI (with 21 arousals associated with obstructive events per hour). He was Dx'd in January, underwent tonsil and adenoid removal in March, had a repeat sleep study in July which showed the OSA has gotten worse (but is still moderate). The etiology behind the OSA is thought to be his retrognathic mandible and high, arched palate and we are trying to follow up with Rapid Maxillary Expansion. In the meantime, we have started using CPAP for 4 weeks now.

We have a Phillips Respironics System One machine with a pressure setting of 5 (recommended after the titration study) and have tried three masks (Pixi, Wisp, and MiniMe). My son is most comfortable in the Pixi, but my insurance won't cover that one.

Anyway, where we can use some help:

The Pixi seems to be his best bet for compliance, but is there any way I can get my insurance to cover it being that the other choices would be paid in full? It doesn't seem right that they just wouldn't let me cover the difference between what they would have spent anyway with a different mask.

Is there anything I can do to reduce the red marks on his face in the morning. If I leave the headgear too loose, it slips in the back up and ruins the seal. If I leave it too tight, he complains it hurts under his cheekbones after a few hours.

He is taking off the mask after about 3 hours each night during a confusional arousal. He has frequent sleep arousals, talking, and night-terrors and when he is in that state, I cannot get the mask to stay on. He is literally ripping it off in his sleep and becomes agitated. I have no issue with him getting to wear it to sleep, but keeping it on is the issue. Is there any way of dealing with this or making the mask more comfortable so he would be less aware of its prescence.

He is a very restless sleeper and is getting entangled around his neck and body with the hose. Is it worth getting a hose holder? Would this help?

Thanks for any help! I can imagine it isn't easy to sleep with CPAP, but I am hoping this will work for him. We have not slept through the night in 4 years with him.

Did you actually talk to your insurance company or are you going by what your DME is telling you? The insurance company doesn't care what mask you use they pay one price for a mask regardless of the type or brand. I'll bet your DME is the problem. Ypu could always ask your doctor to write a prescription specifying the Pixi...then the DME must fill as ordered.

sleeplessmommy wrote:... The Pixi seems to be his best bet for compliance, but is there any way I can get my insurance to cover it being that the other choices would be paid in full? It doesn't seem right that they just wouldn't let me cover the difference between what they would have spent anyway with a different mask. ...

Ugh! I have had WAY too much fun with insurance companies over the years. You do not want those stories. But you have my heart felt empathy.

sleeplessmommy wrote:... Is there anything I can do to reduce the red marks on his face in the morning. If I leave the headgear too loose, it slips in the back up and ruins the seal. If I leave it too tight, he complains it hurts under his cheekbones after a few hours. ...

Pad-A-Cheek to the rescue. Karen, the owner of Pad-A-Cheek may already have strap guards and such to help reduce the pressure of the straps. Check her website at:

http://padacheek.com/

If she does not have anything already available, PLEASE call Karen. She will almost certainly be able to help you. Call Karen. You will see she has a great reputation on this forum. She tries to help make using CPAP devices as comfortable as possible. Her contact information is at:

http://padacheek.com/contact_us.html

sleeplessmommy wrote:... He is literally ripping it off in his sleep and becomes agitated. I have no issue with him getting to wear it to sleep, but keeping it on is the issue. Is there any way of dealing with this or making the mask more comfortable so he would be less aware of its prescence. ...

Unfortunately, it sounds as if you will have to awaken him a little more to get him to calm down. It's not an unusual problem. It takes time for our bodies to fully adjust to the therapy. It can take up to three months before he just doesn't notice it again.

sleeplessmommy wrote:... He is a very restless sleeper and is getting entangled around his neck and body with the hose. Is it worth getting a hose holder? Would this help? ...

Thinks like the Hose Buddy can help keep the CPAP hose out of the way:

https://www.cpap.com/productpage/HoseBu ... ystem.html

I'll let others speak of the merits of various systems. I don't move around all that much in my sleep, so this is not as much of an issue for me. But others can speak from their own experience.

Hope that helps and you and your son and your family will have many nights of restful sleep.

He is a very restless sleeper and is getting entangled around his neck and body with the hose. Is it worth getting a hose holder? Would this help?

The hose really bugged me. I've had good luck with the cheapest hose mgmt system around: JB5651 cpap hose holder. I got it at amazon.com for $11.

You can't go wrong with pad-a-cheek. Karen is the best !! She will help you!

Also, I agree: your mask problem is your DME. Have your doc write an Rx for the exact mask you want, including the maNufacturer name and model # (which you will have to supply), and watch the DME change their tune. Keep a copy of the Rx for replacements. This is how to approach your DME for all cpap supplies. Read this great explanation of DMEs by a cpaptalk member: WHAT YOU NEED TO KNOW BEFORE YOU MEET YOUR DME: http://maskarrayed.wordpress.com/what-y ... me-part-i/.

Hope your own sleep improves, from another special-needs mom.

I agree the first step is to call the insurance company directly to make sure it's rely their policy not to cover the Pixie. If that's really true, then be sure to ask them to send you the "evidence of Coverage". That is a booklet that outlines their contract with you as to exactly what they will provide. You have never seen this EOC, unless you knew enough to ask for it, but it governs what they MUST pay for. So ask them to point out where it says they won't cover this mask if its MEDICALLY NECESSARY. Some EOC's specify that equipment will only be provided according to a limited formulary (more common with HMOs like Kaiser) but most do not. Therefore, you can appeal the denial because they are refusing to pay for medically necessary covered DME.

Ask your doctor to write a letter of medical necessity emphasizing the physical harm your son will suffer if be is not able to be compliant with his treatment because of the mask.

Appeal, appeal, appeal. You have a good chance of winning at appeal. Contact you state agency which regulates health insurers for assistance, and even the media if needed to embarrass the company into doing the right thing.

There's a pediatric forum on the Sleep Apnea Association website here: http://www.apneasupport.org/pediatric-sleep-apnea

Besides support, maybe someone will do trades with you for the Pixie until you can straighten out your insurance.

Appeal, appeal, appeal. You have a good chance of winning at appeal.

be sure to appeal IN WRITING, which starts a clock ticking in many states. Use the word "appeal" in the letter. Address it to the Appeals Dept. Copy any regulator of health care in your state and your insurance commissioner - it only cost another stamp.

Thanks, all. You are right. My DME is the one telling me the Pixi is not covered. I will give my insurance a call on Monday and see what they say. I will try the pad a cheek and hose hanger suggestions too.

I probably will do all this and they will take it away. I'm not sure we will meet the compliance thresholds. He has had a bad upper respiratory infection for the past couple of weeks and hasn't been able to tolerate the mask while he is sick.

You are all so helpful. Thanks again!!

Ask your doctor to document his URI and the need to extend the compliance period. Adult compliance requirements shouldn't apply to children in any case. He NEEDS CPAP for his growth and development and you need to push that. It will make a huge difference to his behavior, focus, learning ability, and overall quality of life.

+100
"Compliance" should NEVER apply to a child!