Re: Going for a sweat test

[Guest guest]

Hi I hope it is not cf .If it is cf then you will be able to get the

medicines to help and learn that cf is not the end of the world.CF is just a

different

part of the world.In explaining to your child the things that will change are

to make her feel better.My 6 year old w/cf discovered this summer her

Grandmother has to take some of the same vitamins she does (her grandmother has

Lupus)she was excited finding someone else who also takes LOTS of medicine her

own

words.In dealing with the waiting the only thing to say is

(Patience,PatiencePatience) the test results are usually available within hours

of the test.If it

is DNA testing it usually takes 7to 10 days for the results.Good

Luck.BeckyB.-Mama to 8--2w/cf--Nana to 2

[Guest guest]

Stay on the list & ask questions & talk , talk to us all. We are hear to

help & just plain ole support. It isn't a " fun " DX , but we all have made it

thru. best wishes . It is better to KNOW & then you are able better to treat

for your wee one & all will be better each day.......

WE ARE HERE ! !....... & have been there-------Done that!

LOVE & HUGS, grandmomBEV

Going for a sweat test

Hi, I have a 5 year old who was diagnosed with asthma at about 18

months. Now after a year of hospital trips, oral steroids, and

worsening asthma our specialist has scheduled him for a sweat test.

He told me they just want to rule CF out - but he must have seen

something that makes him think it is a possibility. Our test is

scheduled for December 15 and I am scared. Does anyone have advice on

how to deal with the stress of waiting for tests and results. And if

the result is positive what advice do you have for dealing with it -

especially in the first few days. How do you explain CF to a 5 year

old.

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

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]

Stick with us. We are all dealing with CF in one way or another. The only way

to deal with the stress of waiting is to try to keep positive in your head that

the results will be no CF, but know that if it is CF, it is better to get the

diagnosis so you can treat your little one. My daughter is five too. We have

always explained that she has CF and it means that she has " special lungs " and

a " special tummy " That's all she really needs to know right now. She's been on

nebulized meds since before her diagnosis at 9 months, they thought it was

asthma.

Is your child small? underweight? Does your little one taste salty when you

give a kiss? bad gas/very smelly bowel movements? These can be clues to CF.

I hope it's not CF but if it is you have hit the jackpot in terms of support

when you stumbled upon this group!

Mom of 5 with CF and one on the way

Check out our group at http://groups.msn.com/TeamJane

Going for a sweat test

Hi, I have a 5 year old who was diagnosed with asthma at about 18

months. Now after a year of hospital trips, oral steroids, and

worsening asthma our specialist has scheduled him for a sweat test.

He told me they just want to rule CF out - but he must have seen

something that makes him think it is a possibility. Our test is

scheduled for December 15 and I am scared. Does anyone have advice on

how to deal with the stress of waiting for tests and results. And if

the result is positive what advice do you have for dealing with it -

especially in the first few days. How do you explain CF to a 5 year

old.

[Guest guest]

Thank-you for your words of encouragement. It is great to hear from

some people who " know how I feel " . I have some great friends but

sometimes you need the support of those who have gone through what

you are going through. This is an amazing group of people. Thank-

you!!!!

[Guest guest]

I kinda remember what I felt like when had his sweat test - they told

me before the results that they were 99% sure he had CF.

I also remember going for Jakes sweat test - had been admitted for

IV's and I was allowed to take him out for dinner, on the way the phone rang

and it was the hospital saying that Jake did not have a positive sweat test - I

felt like a millionaire one second and the next !!! you all know how I felt.

Things have improved so much since then. has grown 9 " and is

getting stronger every day. I would like to give thanks for this.

Happy Thanksgiving

[Guest guest]

Carol, there is a sweat chloride test, and a nasal test, but these do not

work if

your child has mutations that do not cause saltiness. The only real way to

know

is dna testing--if you can get your insurance to pay for it; there are

several ways:

s Hopkins (the blood is specially sent), Quest Diagnostics in

California,

and Ambry, and Toronto in Canada; sometimes it takes a while and sometimes

the first " old-fashioned " test or more in-fashion test does not reveal it.

My cf " Kid " and I are both the " salty " types; but we were both dna tested

later--there

the little mutations were--trouble is that they have found about 3,000 of

them now and have to sort out which ones actually cause cf disease and which

ones

do not--most do--most commonly found is a pair of DeltaF508's--but one can

have one of those and one other. If only it were simple! This is a BIG

gene!

Best of luck and highest hopes, no matter the results! You are welcome

here!

Love to you all,

n Rojas, wcf, mom of 3 outrageous adults, the youngest wc, too

Going for a sweat test

> Hi, I have a 5 year old who was diagnosed with asthma at about 18

> months. Now after a year of hospital trips, oral steroids, and

> worsening asthma our specialist has scheduled him for a sweat test.

> He told me they just want to rule CF out - but he must have seen

> something that makes him think it is a possibility. Our test is

> scheduled for December 15 and I am scared. Does anyone have advice on

> how to deal with the stress of waiting for tests and results. And if

> the result is positive what advice do you have for dealing with it -

> especially in the first few days. How do you explain CF to a 5 year

> old.

>

>

>

>

> -------------------------------------------

> 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]

I meant 9cm but should it really matter

[Guest guest]

Hi Carolyn,

As they say (at least Tom Petty said) " the waiting is the hardest part " . I

don't really have any advice to you on how to get through that, maybe drink a

lot of eggnog (LOL). To explain Cf to a 5 year old, there would really not be a

whole lot you need to explain at this point. If it turns out he needs enzymes

you tell him these are to make his tummy work better. The breathing treatments

for CF and asthma are pretty much the same. Grandmom Bev has a couple of books

designed for young children, big pats and little pats, and there is one called

" I am " . I'm sure she'd be more than happy to send them if you give her

your address.

good luck and I will wish for you that it turns out to be " just asthma "

love,

M

Mom of Nick age 21 nocf and age 19 wcf and asthma