Oh Lordy, now we have been given the CPAP machine

[meltedmarsbars]

Please can I have some advice and experiences?

We have managed to get bedtime into a nice routine so that she actually wants to go to bed - when she gets there she often decides she's not actually going to go to sleep, but thats another matter!

I am dreading this turning into a battle to get the mask on each night. What do you do?

And also it seems that I have my head in the sand somewhat, not seeing how seriously the medical profession are taking all this chest health stuff.

Oh dear.

Sorry, no direct experience, so can't really help (not even sure what a CPAP machine is ) but didn't want this to go unanswered.

Would making up a book for her, with a story about going to bed, and having mask on etc help? a sort of social story, I guess (there are loads of people on here brilliant at doing them)

I tend to make up photobooks of anyhting I need ot get dd1 to do (different kettle of SN fish altogether, but you never know, some things may be the same) and go through it talking about it a LOT, over and over again.

toy CPAP machines for her teddies? tick off whohas a mask on and who doesn't?

(sorry if none of this is appropriate, just reeling off stuff I might try withdd1)

I hope chest issues get better soon

Thanks for your replies - I don't know if a story would work, she's quite determined not to have the mask anywhere near her, and doesn't really have the attention span or understanding for stories, she's quite sld really. I could try it on the teddies first, though, that's a good idea.

The chest issue is a gradual downward slope, I suspect - bronchiectasis, apnoea, hypopnoea and paradoxical breathing.

Riven I have never tired SKITUK - what is it?

SKITUK is SPecial Kids in the UK - it has a forum too, with a lot of good advice.

I wasn't really thinking story stories, more a visual strip of photos/pecs/drawings with added commentary form you as necessary.

Would it be possible for you/dh/older siblings to tryon mask, and show her its not scary? with added commentary about how much better you feel? (dd1 would have enjoyed this as a pantomime, but not fallen for it one little bit, so feel free to tell me to shut up )

SKITUK

Come on over xx

Leonie - afib? Whats that

Off to have a look at SKITUK.

Thanks

My dd first had cpap and mask when she was 2. continued till 11 and now tracheostomy and ventilator.
I am not sure how old your dd is. My dd's experience started after her being v ill in hospital (ventilated etc etc) so it all started in a very controlled environment.
For her, it became a very comforting trigger that now it was bedtime, and on went the kit, after we had had the ordinary bath/story etc routine. we just tried to make the whole thing as unexciting and unstressy as possible. I remember we used to have the kit hanging about so DD and her sister could see it all the time, other people treated her as completely normal and uninteresting when it was on, and she ended up not wanting to go to sleep without it.
Is the mask going over just nose or nose and mouth? We found it easier to go for the whole nose and mouth and she was able to talk through the breaths. The other thing is to get the pressure set perhaps too low to start with: the breath comes with a massive rush and you could very gradually up the pressure to the right setting. Also, keep an eye on pressure points on the ridge of the nose etc: used for long periods it can also cause malformation of a growing jaw so do make sure your consultants have checked the literature (we discovered that in some places the kit is actually used not for breathing but to correct jaw abnormalities). Come back to me if you have any other questions. .....

Thanks, Cloelia, and Leonie

dd2 is nearly 8, and has been given this for a combination of apnoea, hypopnoea, paradoxical breathing and bronchiectasis. This is on top pf her underlying condition.

So far we have just played with the kit - we have been given 2 types of nose-and-mouth masks.

I was wondering whether to put it on after she is asleep - she has SLD so is unlikely to accept it with any reasoning, but I am sure she she will go wild when she wakes up with it on?

The pressure has been preset, so I cannot fiddle with it.

I think it would be v frightening to have it put on when asleep and wake up and have the air rushing at you. have you any other children? I feel the best route is the one suggested above where you all get a mask and just start wearing them as a routine at bed time, stupid as it might feel, perhaps on your forehead to start with, gradually moving it down; or get dd to wear it for 5 mins and increase really gradually. Is there a half way house between awake and asleep where she could be persuaded to put it on? Also, my dd was really particular about fixing the mask on first before turning on the machine so the air was not blasting around her while we fiddled with the straps etc (and also when taking it off, we HAD to turn the machine off first). Sometimes they can be set to start with a lowish stepped sort of pressure so it does not all come at once. Sorry I am burbling a bit but I think on reflection this is a 2 stage business, a) the mask and then b) the ventilator and you should aim for acceptance of a) first.

we've had it out at bedtime so all the dc's can "play" with it, but as soon as we a put a mask on the tube, she turns away shouting her version of "Aaaargh, no, get that awful thing away from me" etc, getting quite distressed.

I think she remembers having an oxygen mask when she was very ill in hosp with double pneumonia a year ago.

It does have a ramped start so it doesn't suddenly gush when we turn it on.

I think we'll keep trying, but I'm also talking to the doctors because we're not sure this is the right way to give her a good quality of life - we know it will be of limited length, so why make it hell?