Pediatric OSA Mom needing support

My 4 y/o daughter had her tonsils and adenoids removed in January 2015. In May she was diagnosed with reflux and in July diagnosed with severe OSA (even with no tonsils and adenoids). She is on a 10 pressure and has had her CPAP machine for 2 weeks. Honestly; these have been the worst 2 weeks sleep of my entire life- and I'm sure hers as well. The first few days she would sleep from 730-1030ish and then wake roughly every 20-25 min when her ramp feature reached an 8ish pressure. I would get up and reramp it with hopes to get her back to sleep- but 20-25 min later she would wake all night long. I called the dr to get an updated prescription of 5 for a few weeks, then 6, and so on so that she can work up to 10. The pressure has helped but now she is complaining of her nose hurting and wakes constantly throughout the night to rip off the mask. I feel so out of control and how can something that's supposed to be helping her sleep make her so miserable at night? I'm devastated, sleep deprived, and frustrated with the lack of help we are receiving. Does this get better? How do I make it better? Any words of advice from seasoned pros?

Sign up and log in. Then people can send you private emails.

Tell us in great detail what machine and mask she is using. There are manuals and software available which will allow you to see her sleep breath by breath. There are lots of really competent people who will hold your hand, so to speak.

You are taking the right route by increasing her pressure slowly.

There are lots of little comfort tricks that can help you too when we know which mask she is using.

There are lanolin creams in the baby aisle used for breastfeeding when you have sore nipples, that is safe to use with the mask and might help her sore nose.

BlackSpinner is right -- sign up and log into the site. I know of one person that joined for her child as well so maybe she could be of help to you. Once you have joined, send me a PM and I'll try to hook you up with her if I can.

I just signed up and logged in. Thank you.

She's on a respironics system one. I am trying to figure out a way to attach a picture from the mobile interface so that you can see her mask. Thank you!!!

I am so sorry this is difficult! There was another forum that had a dedicated group for parents of young children on CPAP. but it no longer exists. I remember reading suggestions on how to get your child used to the mask that were age appropriate. Things like playing games with the little one and rewarding her for wearing her "elephant nose" during the game--etc.

One thing we can help with is no matter what the "prescription" says, YOU can control the pressure. You can change the settings to increase her comfort until she gets used to the CPAP, and then gradually increase the pressure to her prescribed pressure. You can turn the ramp off. You can also look at the data and make adjustments accordingly. Her doctor may not like this, or agree, but I'm very much in the school of "mother knows best". He doesn't have to be there all night with her.

But first you have to educate yourself so you understand the effect of what you are doing and you are acting in your daughter's best interests.

Start by filling in your profile so we know which make and model of machine and mask your daughter is using. Then CPAP Wiki lightbulb icon in the mast head and start learning. It's a steep learning curve, but keep in mind that NOBODY cares more about your daughter's health than you do, so the more educated you are, the more you can help her.

Ask any questions you need to here--there's a vast body of knowledge and experience. There is free, open source software that will allow you to see your daughter's data, and that will help you understand what is happening. We can help with this all. But start with telling us what equipment your daughter has.

mbdrew wrote:I just signed up and logged in. Thank you.

She's on a respironics system one. I am trying to figure out a way to attach a picture from the mobile interface so that you can see her mask. Thank you!!!

We need to know what model of Respironics machine.
REMOVE THE HUMIDIFIER, then turn the unit upside down and look for the model number. Let us know what the model number is.

Look on the mask for something that indicates the brand(i.e. ResMed, Respironics, Fisher & Paykel, etc.). And note if it's a "full face" mask (over mouth and nose) , a "nasal mask" (over the nose) or a "nasal pillow" mask (parts of this go against the nostrils). Then you can do a search on cpap.com for the brand and type of mask to figure out what model it is. We would prefer words (Resmed Swift FX) instead of photos.

She uses a PR System One REMStar 60 Series Auto CPAP

Her mask is a nasal mask. It's made my Respironics, but I don't think they make them any more. It's a Profile Lite CPAP Mask and Headgear

I just want you to know that you found the right place. The people here are all OSA / CPAP users, and many of them have been helping me out these last couple days. You are not alone and although this is a long road ahead of you and your daughter, I think the people here will help you every step of the way, just like they are doing for me.

My daughter at the age of 4 had her tonsils removed as well as her adenoids for being to large. Poor girl would wake up covered in sweat from trying to breath. She grew out of it and hopefully your daughter will as well.

The GURD is probably from trying to breath and it upsets her stomach. Eat smaller meals in the evening, nothing after 6 pm, watch the high acid foods content, no evening snacks etc. It is tough for a small child to go that long without eating but it will help with the night time GURD. I am sure you are doing this already, but having the bed at an incline will help keep the food in the belly and not up in the throat.

Good Luck

Rich

OK, somebody will be along to set you up with links so you can get into the clinician's menu and reset the pressure, turn off the ramp, etc. Someone will also guide you to Sleepyhead software that will allow you to download her data and that might help you figure out what's waking her (but you're probably right that the ramp ends and the higher pressure is waking her).

They still make the Profile Lite (you can see it on CPAP.com). If you look at my Taming the Mirage Quattro in my blog below there might be some helpful tips to get the pressure off the bridge of her nose (I know they are different masks but the principles are the same--let the cushion fill with air for the fitting, tilt the mask away from the bridge of the nose and slightly tighter below). Proper fit is looser than you would think. Are you using the gel spacer? It looks like that will help tilt the mask out away from the bridge of the nose.

If you search for "youth masks" on that site, you will see that there are a few other options. She may do better with a softer mask like the mirage Kidsta or the Pixie--the frames are not as rigid, so they are more comfortable. You will have to contact the DME about that. Perhaps a different mask would be better tolerated. You can also try a padacheek liner (http://www.padacheek.com) which might make it more comfortable for your daughter. A member here, Karen is the owner of Padacheek and she will work with you to find a solution.

Thank you so much everyone! This has been an incredibly stressful time for us! It's nice to know we aren't alone!