possible missed diagnosis

[Guest guest]

It's been a while since I've been online here. And this is not about

my son Wyatt. Who is doing fine no problems to speak of at all thank

God!!

My best friends son is 7 yrs old. And we have been fighting for a CF

blood test for years. They say he has CSID. Which is the

malabsorbtion of sugars. Any way we finall talked a doctor into

letting him try the enzymes because all his enzyme levels came back

low lying or non existant. They worked!!! He went from having 10-15

LOOSE bms a day to one fully formed.( sorry for the poop talk) He has

had sweat cloride tests done. And they are either unconclusive or

low. My question is. Has anyone hear heard or know of anyone with

low sweat cloride and still have CF? He has all the other simptoms.

We think that the left untreated the CF may have stripped his bowels

leaving no enzymes. Thus hiding the real problem CF. Any comments or

info is very welcome Please!!!!

Thanks to all,

Kim Mom of Wyatt wcf 3yrs, and Kiefer 4yrs ncf

[Guest guest]

--- He went from having 10-15

> LOOSE bms a day to one fully formed.( sorry for the poop talk) He

has

> had sweat cloride tests done. And they are either unconclusive or

> low. My question is. Has anyone hear heard or know of anyone with

> low sweat cloride and still have CF? He has all the other

simptoms.

> We think that the left untreated the CF may have stripped his

bowels

> leaving no enzymes. Thus hiding the real problem CF. Any comments

or

> info is very welcome Please!!!!

>

> Thanks to all,

> Kim Mom of Wyatt wcf 3yrs, and Kiefer 4yrs ncf

Yes- my son. His sweat tests were always in the indeterminate range

(40>60). I badgered the ped enough he referred us to a CF doctor.

First test from Genzyme found 1 mutation. The second test from Ambry

found another mutation. Both the ENT and pediatrician said it

probably isn't CF because he is too healthy. I only wish.

jan