GI symptoms, normal sweat test, & mutations

[Guest guest]

I just got a call from a dr at Rainbow Babies.

Very nice.

However, I think he is still unaware about so many atypical forms of CF.'

I would have been too, if it wasn't for you guys!

Everyone is so different.

He said that it would be really rare for him to have CF with such prominant GI

symptoms and a normal sweat test.

Nonetheless, he did not say it was NOT possible.

Anyway, he did say that it sounds like CF. He also said that if it was CF and he

GI symptoms were related, that people with those types of mutations, have a high

sweat test.

So, my question is:

How many of you or your children, have had a normal sweat test and still have GI

symptoms?

He is sending me the information to get to Caden's ped. She will have to order

the kit from the testing center and then collect his blood and send it in.

He had suggested doing the 80something mutations as opposed the 1000 due to

cost, but if I have to pay for it, I would rather go foward with the full test.

His ins. may cover it but I doubt it. We will see though.

Did your children have the 1000 mut. study?

Rosemary, do your kids have GI symptoms? I know they all had normal sweat test?

What kind of mutations do they have?

Thanks for helping out once more,

Krystena s