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Congenital Central Hypoventilation Syndrome

(1 Post)
whoops Mon 18-Aug-14 17:13:24

Does anyone have any experience of this?

Drs are baffled with ds who is 12 dropping his SATS while asleep and although we await the results of a blood test for phox2b which would probably confirm that he has CCHS. We understand it is quite rare in older children would be good to hear of other peoples experiences

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