Sleep study results .... aargh!

[meltedmarsbars]

Middling results - oxygen sats are better this time, but we have paradoxical breathing, obstructive apnoea and hypopnoea.

So they want to do a trial of CPAP - I was dreading this. We tried a CPEP mask over Christmas and she would not tolerate it anywhere near her face - and I completely understand why!

How do I keep a mask on a child with learning difficulties?

oh lord good luck. how confident do you feel in your respiratory nursing team? Where are you? Ours is v good and have several children in your situation who have masks. Perhaps your lot could contact my lot for some advice? Ours are in Plymouth and I could give you the name of who to contact.

We are Leics - thats quite a long way from Plymouth!

I'm dreading the interventions - will try to put them off as long as possible because I know she won't enjoy it.

oh no ! we just waiting to go in for chloes, but we had a sats monitor for two days her says was ok. how do you know if sats was ok about paradoxical breathing?

She has always had dodgy sats, but this time they were ok despite the rest of the problems!

I had to look up all these medical terms when I got the letter!

Hi

I'll be interested to hear anyone's advice - my daughter has Downs syndrome and is waiting for results on various tests but the Drs seem to think she might have obstructive sleep apnoea. If so she will need CPAP. She currently has nasogastric prongs with oxygen at night and pulls those out so can't see her tolerating CPAP!

PS we're in Leics too!

I used to have to put CPAP and BIPAP (similar) on adults with severe breathing difficulties in A&E. They hated it and sometimes tried to drag it off. Its like that film Alien with the 'thing' stuck on your face. AND they knew it was saving their lives! God knows how anyone can persuade a young child to cope with it. I hope the respiratory nurses have some tricks up their sleaves because you'll all need them. Is there no other way until she has some understanding of the need? Good luck anyway.

Well, the only other way is to politely decline the intervention!

Seriously, I do wonder if it will make a ha'penny worth of difference in the grand scheme of things.

Jillycats - we may know each other already? Is your dd at sn or ms school?

Meltedmarsbars - my dd isn't at school yet as she's only 10mths, but I work in a special school!

oooh, are you going to tell me which one?

has anyone suggested the tent type set up rather than having to have the mask? My friend's ds has this cos he won't keep the mask on. Think they had to try the mask first.

We might be heading down cpap road too

Mars would she tolerate a head box?

Looks like I have plenty of questions to ask at the next appt.

Thanks, ladies!

Hi Meltedmarsbars

Don't want to put the name of school on open forum, but can't message you off the board. Send me a message and I'll tell you!!