CPAP - anyone else with a child on it?

[SallyBear]

DD had a sleep study at GOSH last week as we have a history of obstructive sleep apnoea (OSA). She has respiratory problems relating to Treacher Collins Syndrome, and has been decannulated twice (tracheostomy tube removed) and has had two successful jaw distractions. She is now 12, and is moody and tired. DH was certain it was teenage years, I thought OSA. I was right. . We have been sent home with CPAP as ENT will need to investigate where her obstruction is and if she will require more surgery.

Anyone out there able to guide me through the pitfalls of CPAP please?

Bump bumpity bump!

Much younger child here with cpap and without the complexities you have. Compliance to wear it for us was the worst bit but we have been very lucky once that was sorted.

Make sure the mask is a good fit and the headgear well adjusted, we had to sew an extra strap on ours to keep the top band from falling down the forehead. Get a pillow with a horizontal groove in the middle to stop the mask being displaced when sleeping on side. We got ours from dunelm was about £14 think it was sold as pillow for back sleepers. We also run the pipe under the duvet as makes the air warmer as can be cold from the machine.

Fire away if you have any questions.

Are you using the pixie mask? It couldn't fit as it went right across her BAHA abutment in her head, so I think that the mask just fits but they feel it will last her years.
I like the idea about the pipe running under the duvet. I am worried about the dry mouth thing. We have some silt tape to put on her nose tonight, as she said it was uncomfortable across her bridge. I will look into the pillow. We have a Dunelm here, so hopefully they have one. Thank.

I don't know what the name of the mask is, it is a nose and mouth one. It was new out when dd had it apparently it has a hovercraft type edge. The bit that joins the face is very soft and thin the rest of the mask is less flexible. It has worked well for us, she sometimes gets a bit of redness where the mask is bit we use a bit of cavlon for a few days.

Is it making her nose sore as it is resting too much on it? That is why we had to add an extra strap to the headgear. The front strap was slipping down her forehead meaning the mask was sat on her nose rather than being held against her face iykwim. We sewed a strap between the back strap and the front one so they can't move apart, it's really hard to describe but hope I am making some sense! You probably have a different headgear to us though as one of the straps on ours would interfere with a baha abutment.