Re: Question about doc response to drop of sats/comment

February 3, 2004

Georgianna, it would have send my adult wcf's pediatrician into a complete

panic, and would my doctor for me as a cf adult today. Ask your doctor about

hospitalization and a sleep study as well as either an EBCT (electron beam

computerized tomography scan, or fast cf scan and/or an MRI of her

chest. As my doctor has always said, " X-rays are a very crude instrument,

and were designed for bones, not soft tissue or air. " Call her doctor; if this

were my child--and I am a very aggressive and protective parent, I would

want a bronchoscopy and at least 21 days of antibiotics, whether in hos

pital or at home--that said, as a person wcf myself and the mother of two

carriers and one wcf, I tend to be on HIGH ALERT. Whether because of this

or despite it, I am now 66 and my " kid " wcf is now approaching 39! Go, de-

mand that those doctors NOT give up on your child, no matter what the de

gree of severity or other illnesses or conditions present. (drum roll!),

Love to you all in your family, n Rojas

Question about doc response to drop of sats

My daughter is almost 4 and has a long list of medical problems, one

of which is cf. I was wondering what the typical response of

doctors is when a child is having desaturations. is probably

colonized with psuedomonas and typically sats around 95 when awake

and 92 when asleep (although she varies quite a bit during the

night). For almost a week she has been dropping to the low 80's

when asleep so I have been putting her on oxygen at night and using

blow by during naps. When she is awake she is typically satting 89-

91 although sometimes a little higher or lower. Is this kind of

change something that would get your kids' doctors very excited?

Georgianna

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