Re: sons second sweat test results and daughters first

[Guest guest]

In a message dated 3/1/2004 9:23:35 PM Central Standard Time,

Mrsmurffy@... writes:

S.

Hi !! I was in you shoes about 6 years ago when two of my daughters was

diagnosed. We went in think my oldest had CF but I know deep down in my heart

I new my youngest did too. I have 3 daughters but I knew by the symptoms of CF

that my middle daughter did not but I wanted to make sure so I had her

tested. I will never forget the doctor coming in to tell my that my youngest

also

had CF. I just looked at him and said your not telling me anything that I didn't

all ready know. I know it is hard after the reality hits but the more you

learn about this disease they more you will learn that there is a lot of new

drugs out there that they did not have years ago. Of all of the disease out

there

they say that this one will be cured!! Our doctor told us he thinks it will be

in 10 years I told him I am holding him to it. He has 4 more years to go!!!

Glad you founds us and I know you will like this group. Take care. Deb A

[Guest guest]

Hi ,

If the sweat test is done properly, it is still the gold stard for a

CF diagnosis. On the other hand false negatives are common in

certain mutations. Now that you have a diagnosis you can treat the

children properly. The good news is that there are so many good

stuff to treat CF and there are a lot more on the pipeline. Don't

believe everything you read, pick and choose, as you have seen we

have so many older CF patients on this list, and a lot more on other

lists. It seems like the common denominator, to longevity, between

all these folks has been excelent health care. Having two children

with CF may prove to be challenging but at least you have them and

you can make sure that they do well. Lots of parents do not have that

chance.

You and your children will be in my special thoughts.

Keep the faith,

> I took my son back to a CF approved testing lab for a second sweat

> test to confirm the first positive and the doctor called tonight

that

> his second test was also positive with a level of 78.

> My doc also wanted me to test my two daughters, I took the middle

> girl in and she had her first sweat test and hers was positive also.

> i will try to get her in for a second tomorrow.

> Again thanks for all the info and help

> S.

[Guest guest]

GOOOOOOOOOOOOOOOOOOOOOOOOOO, !! Thank you, n

Rojas

Re: sons second sweat test results and daughters first

Hi ,

If the sweat test is done properly, it is still the gold stard for a

CF diagnosis. On the other hand false negatives are common in

certain mutations. Now that you have a diagnosis you can treat the

children properly. The good news is that there are so many good

stuff to treat CF and there are a lot more on the pipeline. Don't

believe everything you read, pick and choose, as you have seen we

have so many older CF patients on this list, and a lot more on other

lists. It seems like the common denominator, to longevity, between

all these folks has been excelent health care. Having two children

with CF may prove to be challenging but at least you have them and

you can make sure that they do well. Lots of parents do not have that

chance.

You and your children will be in my special thoughts.

Keep the faith,

> I took my son back to a CF approved testing lab for a second sweat

> test to confirm the first positive and the doctor called tonight

that

> his second test was also positive with a level of 78.

> My doc also wanted me to test my two daughters, I took the middle

> girl in and she had her first sweat test and hers was positive also.

> i will try to get her in for a second tomorrow.

> Again thanks for all the info and help

> S.

-------------------------------------------

The opinions and information exchanged on this list should IN NO WAY

be construed as medical advice.

PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR TREATMENTS.

------------------------------------

[Guest guest]

; this is hard, of course, but do keep us all posted, and take good

care of you as you go through all this--Love, n Rojas

sons second sweat test results and daughters first

I took my son back to a CF approved testing lab for a second sweat

test to confirm the first positive and the doctor called tonight that

his second test was also positive with a level of 78.

My doc also wanted me to test my two daughters, I took the middle

girl in and she had her first sweat test and hers was positive also.

i will try to get her in for a second tomorrow.

Again thanks for all the info and help

S.

-------------------------------------------

The opinions and information exchanged on this list should IN NO WAY

be construed as medical advice.

PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR TREATMENTS.

------------------------------------

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[Guest guest]

Dear ,

I am sorry to hear your kids do have cf. But maybe it is a bit of a relief

knowing just what it is and now you can get them properly treated. I hope you

stick with us. I think this is the best list for newly diagnosed parents that I

know of.

love,

M

[Guest guest]

,

I am thinking of you and your children. I know how hard it is to have one

diagnosis, but with diagnosis comes treatment and with treatment comes better

health. keeping you all in my special thoughts.

mom of 5 with CF and a boy on the way no CF

sons second sweat test results and daughters first

I took my son back to a CF approved testing lab for a second sweat

test to confirm the first positive and the doctor called tonight that

his second test was also positive with a level of 78.

My doc also wanted me to test my two daughters, I took the middle

girl in and she had her first sweat test and hers was positive also.

i will try to get her in for a second tomorrow.

Again thanks for all the info and help

S.

-------------------------------------------

The opinions and information exchanged on this list should IN NO WAY

be construed as medical advice.

PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR TREATMENTS.

------------------------------------

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