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CPAP for DD. Any experiences?

(8 Posts)
shedragon Mon 11-Jul-11 22:18:51

My 3 yr old DD has obstructive sleep apnoea, we've been thru the getting diagnosed business, surgery twice, and now it's time for CPAP. am obviously v upset but that's life. She's otherwise heLthy and normal. Except for being knackered all the time. As are we.

Am feeling quite isolated in this and I don't find the hospital much help. Anyone have any experience to share? We've a mask fitting soon, so at the early stages.

Sirzy Tue 12-Jul-11 16:23:34

No advice but bumping for you in the hope someone can help.

Ds was on cpap as a baby but only for 5 days in hospital.

Hope it helps her

Galena Tue 12-Jul-11 20:52:33

DD was on CPAP for 3 weeks as a newborn prem. Also when she was in hospital during an asthma attack at around a year she was in HDU and they told us that if her sats didn't come up they'd put her on CPAP but they did. There was a little girl also in HDU with the CPAP on (she had it on all the time, not just at night which I'm assuming your DD will have?) and she'd got so used to it she just got on with playing and so on without being at all phased by it.

CMOTdibbler Tue 12-Jul-11 21:21:44

I think the Sleep Apnoea association can point you to people with experience of cpap in children - my dh has found them v helpful. Be aware that she might have to try a few masks before finding the best for her, and don't let them fob you off with an old and cranky cpap machine. Humidifiers make life much nicer, and an auto cpap is much easier to get to sleep with and will respond to her needs

shedragon Tue 12-Jul-11 22:44:26

Thanx so much everyone. We have been thru the mill for 3 years, told soo many times to sleep train etc. (Another reason to beware the sleep training thing). Finally we get a diagnosis. Turns out she has severe sleep apnoea. Then we had to go thru the waiting for surgery, having surgery, did it work, oops she needs more surgery, wait , did it work.... And it went on and on. Meanwhile here's a very stressed family with a stressed child at night and very little sleep for one or both parents, usually me. So now we wait again for mask fitting. Anyway, that's just me venting. It's been hard.

Auto CPAP? Will ask about. Also humidifier. Have been trawling the Internet with ltd success so it's great to have pointers. Yes galena, it's just for night. Hopefully DD will adjust as well as that other little girl.

Will contact sleep association. Isn't it funny, usually that would have been the first thing I'd do but I never did! So stuck in the situation and tiredness that I couldn't see the wood from the trees.

Thanx all.

CMOTdibbler Wed 13-Jul-11 02:45:35

This is the one dh has. He chooses to buy his own so he gets something he really likes. A tube cover is also great as it stops the tube rubbing on the side of the bed and making a noise

tooloudhere Wed 13-Jul-11 10:02:41

My four year old sleeps on a CPAP machine. For us it has been a real benefit, yes I was gutted when it was the only option left but it has made such a difference to all of our lives.
Our hospital takes very good care of our equipment but you will get very little choice in what you get. They gave us the mask and machine and training how to use it in one go, they spent alot of time getting a good fit on a mask and ended up with a new sort they had which fits like a hovercraft with a very soft seal so it doesn't mark the skin too much.
You start out with a very basic machine on a low setting to start off with it is all about getting them to accept the equipment and use it. We did notice a difference during this time but the real turn around came when we went back and got the settings turned up, the daytime symptoms went then completely.
We found giving her ownership of the machine really helpful for acceptance, telling her this is your machine/space man mask etc. Encouraging her to press the start button and so on.
Feel free to pm me if you want any more info or to chat.

shedragon Wed 13-Jul-11 22:09:09

Thanx again everyone.

That's so helpful. So good to know kids CAN get used to the mask. I will take you up on your pm offer, tooloudhere. Can't seem to pm from my iPhone and PC has gone belly-up today so will do when I'm up and running again (unless someone can tell me how to pm from my iPhone). It's really heartening to hear the positive effect CPAP has had on your home/lives.

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