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Jaydon my 2yr 9mth has started Cpap
Hi
I havent posted alot in recent months but I do read often Jaydon went in for a sleep study and started trial ventilation at night we tried bipap but he tolerated cpap better
we tried the full face mask but he didnt like it as he rubs his eyes in his sleep so we are using a nasal mask which so far is working better
He is on a pressure of 5 for now to get him used to the new night sleep partner and we need to gradually go to 8 possibly 10 depending on next study result
Tonight we struggled getting the mask on but he gave in and is so far kept it on
Im looking at the Fitlife full face cpap mask can anyone tell me how much the spare seals are and if they are readily available as the nhs wont be covering it.
Thanks Carol
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Replies to This Discussion
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Permalink Reply by Kath Hope on
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Just spotted this new post Carol, and I've just asked how Jaydon's doing on the other one, so now I know!
Regarding the FitLife, you don't buy replacement seals as the mask comes as all one unit, and it's an easy one to clean. As you'll know, I use the FitLife (and also have to buy it as our clinic don't supply it), and the mask has lasted me well over a year. I'm on my 2nd now, but that's because I wanted the new one with improvements. The only thing you may have to replace is the headgear, which lasts longer than the mask. Having said that, Respironics' headgear is a lot better than some of the other manufacturers.' There's a link to the headgear here http://www.hope2sleep.co.uk/products/47
Have you seen the pictures of little Emil with his FitLife mask on? Emil with his FitLife Mask Rachel, his Mum sent me them to help other parents struggling with masks.
Am sorry to hear the NHS won't fund this mask - some will and some won't - postcode lottery again!
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Permalink Reply by carol murphy on
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Hi Kath
thanks for the reply I actually speak to Emils mum as he also has Laryngomalacia :) she has been great for tips with teething issues on cpap .....just waiting on a ventilation nurse to see what I can and Cant get from the nhs .....
I am amazed at the totally different daytime child I have and he has only been on it for a week
regards
Carol
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