Re: New here, currently living in limbo land with my 5 year old. Intro & lots o

July 21, 2003

> Dear Liba,

> It does sound a lot like CF to me, and even if its not you're

welcome here.

> I guess I'd recommend you do the ambry test but it has failed to

find one of

> my daughters mutations. she has pos sweat tests and all symptoms so

it is

> assumed she has CF. Let us know what happens,

> love,

>

> mom of age 19 wcf and Nick age 21 nocf

> PS was diagnosed at age 8 mos due to dehydration, failure to

thrive,

> bronchitis and weird low electrolytes.

Oh wow, a positive sweat test and negative Ambry test? That doesn't

make me feel better about doing the Ambry test. I wanted to have a

deffinate answer.

Looking back through my daughter's records her first iv rehydration

and chest xray were when she was 7 months old. She got a shot of

antibiotics then too. She wasn't diagnosed as failure to thrive yet

at that point as far as I know, but she stopped gaining and started

losing at 6 months, we thought that it was because we had started

solids and she wasn't doing well with them.

I will certainly let you know what happens!

Thanks for the welcome,

Liba

July 21, 2003

> Your girls are very lovely. :-) Stay on the list with us, we don't

mind at all.

>

> I too would encourage the ambry route. Proper diagnosis goes a

long way toward treating illness.

>

> Dawn mom of 4, 7 and under, the youngest wcf

>

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