Sleep Apnoea Forum Bringing Help + Support to the Patient
20 year old daughter diagnosed with sleep apnea at St James hospital Leeds. CPAP machine needed, appointment in December.
Any advice really appreciated as there are some pre-existing conditions including aspergers, so wondering how she is going to react to the mask, noise from the machine etc.
Thanks for reading x
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Oh, difficult maybe, but it might just surprise you.
They are not that noisy these days.
If you have trouble with her keeping on the mask, try putting it on without the hose or machine connected while she is watching TV etc. This will get her used to the mask being on her face. Do watch out for claustrophobia though, it makes a lot of people panic. The aforementioned will also help with this. Ones she gets used to the mask, try her with the hose and machine connected while watching TV etc. You may have to sit with her for a start until she get used to the set up. But she will get used to it and you will see her energy levels rise as she gets her energy back form getting a good sleep.
You will have some problems with leaking masks etc, especially during the might when she turns in her sleep, but don't despair, it may take a while but you will both get there.
Do NOT be tempted to over tighten the mask as this may cause broken skin and bleeding and a lot of pain to the bridge of the nose. Just tighten it tight enough to stop leaks and no more, during the night it will loosen, but just tighten it slightly to stop the leak. If leaks are bad, get another make of mask or a different size.
Hope this helps a bit.
Thanks for your reply.
All really useful information, will wait and see how it goes. Hoping she takes to it ok and it makes a difference. Our appointment in Leeds is the week leading up to xmas!
Interestingly, I've come across a lot of people over the years with asperger's and sleep apnoea. Quite a lot of them have told me that since getting treated with CPAP their asperger's has improved (these are adults). I do hope this happens with your daughter. As has been said already, the machines aren't really noisy these days, although I wouldn't know whether the quiet hum would bother certain people with asperger's and St James are a very good clinic, so hopefully will be supportive of your daughter when you go for the mask fitting and to get the machine.
If you take a look at the help sheet on the website and think it will be helpful, you're free to download it and print it out http://www.hope2sleep.co.uk/desensitisation-tips-for-new-cpap-and-v...
Good luck and do let us know how your daughter gets on.
Thanks for the reply. Interesting to know about your experience of aspergers and sleep apnea. St James are being very helpful, they have sent her some information to look at about CPAP before we go and seem to be really on the ball about supporting people with additional needs. Will let you know how it goes.
That's wonderful to hear St James' are already being supportive, as I guessed correctly they would be :) I do hope your daughter gets improvements to the other issues you mentioned she has.
R Watson said:
Thanks for the reply. Interesting to know about your experience of aspergers and sleep apnea. St James are being very helpful, they have sent her some information to look at about CPAP before we go and seem to be really on the ball about supporting people with additional needs. Will let you know how it goes.
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