Re: 1st Visit to CF Clinic on Tuesday

[Guest guest]

Polly,

The sweat tests don't hurt. To a child it seems scary, after our daughter was

diagnosed we had to have our son tested and it didn't hurt him, but it sure

scared the mess out of him (he was only 3 at the time). Piper had 3 sweat tests

in all , the first one didn't produce enough sweat, the second one gave us a

positive diagnosis with her number being 98, they did her third one to confirm

the second one and her number was 105. Piper was 4 months old when they did her

tests and she didn't cry a bit so I know that it did not hurt her.

As far as asking questions, there are still questions that I wished I had asked.

Just write down anything that you are concerned about, confused about, or just

generally don't understand, I have found that to be very helpful, even if I

think that it might be a stupid question, I still ask.

Katy

mom to Austin 4 no CF & Piper 13 months w/CF

[Guest guest]

I saw your post and was reminded of a post on cysticfibrosis.com that I read not

too long ago. 2 people there said that their sweat test hurt too. So I guess

while it might be uncommon, some people have pain from it. I don't know what I

would ask on a first trip to CF clinic. when was dx the whole thing was

a blur. I was taught the basics in the hospital because she had to be admitted.

good luck and I will keep you both in my thoughts.

1st Visit to CF Clinic on Tuesday

We will be consulting with a pulmonologist at the CF Clinic in

Chapel Hill this coming Tuesday. They tell me to expect another

sweat test to be performed (the 1st 2, performed locally, were

negative) I'm hesitant because the tests have been very painful for

my daughter to endure. They told me that they shouldn't hurt.

Question #1: What are your experiences with sweat tests?

Question #2, for those who have tread this path before me:

What questions do you wish you would have asked on your 1st CF

Center visit?

This will be a 2 1/2 to 3 hour trip one way. I want to be prepared

as much as possible for this initial visit.

I thank you in advance for your replies.

All my best,

Polly

Mom to " nearly 9yo " in diagnostic limbo (one mutation identified, 2

negative sweats and achromobacter in lungs requiring IV antibiotics)

[Guest guest]

>We will be consulting with a pulmonologist at the CF Clinic in

>Chapel Hill this coming Tuesday. They tell me to expect another

>sweat test to be performed (the 1st 2, performed locally, were

>negative) I'm hesitant because the tests have been very painful for

>my daughter to endure. They told me that they shouldn't hurt.

>

>Question #1: What are your experiences with sweat tests?

Tests done in non-CF clinic were useless. None could get the right

amount of sweat. But patient was an infant, so it may have not been

the fault of the hospital.

But, no pain.

>

>Question #2, for those who have tread this path before me:

>

>What questions do you wish you would have asked on your 1st CF

>Center visit?

Ask about CPT or other preventative maintenance. What should you

avoid? What should you encourage.

Wish I could think of more questions, but tit has been a long time...

Ask for ALL the literature they have available.

Lenora

>

>This will be a 2 1/2 to 3 hour trip one way. I want to be prepared

>as much as possible for this initial visit.

>

>I thank you in advance for your replies.

>

>All my best,

>

>Polly

>

>Mom to " nearly 9yo " in diagnostic limbo (one mutation identified, 2

>negative sweats and achromobacter in lungs requiring IV antibiotics)

>

>

>

[Guest guest]

My daughters' sweat tests hurt them. My older daughter was five when

hers was done and she didn't cry or get upset at all until they turned

the voltage up for the last couple minutes of the stimulation. She

had been really brave up until that point, but then her breathing got

faster and her eyes started welling up with tears. I am 100% sure it

really hurt her. My two year old, who had her test done at a

different CF clinic, started crying and fussing as soon as they turned

the current on. She was also in pain. She didn't scream or get upset

until the switch was turned to on, so it was the current and not the

straps and all that upset her.

I had also heard that the test doesn't hurt so I was surprised and

upset that it hurt my girls.

Liba

[Guest guest]

Thank you all for your responses! I feel as armed and ready as one

can be. Wish us luck and please keep us in your " special

thoughts " . Although we are praying for a " negative " CF result, it

is comforting to know that support/informational groups such as this

exist. You all have been very helpful and I will continue

to " think " of you in my daily " thoughts " .

All my best,

Polly-mom to " nearly 9yo " in diagnostic limbo

[Guest guest]

Your more then welcome as you know .We each are

" thinking " the same way as you are, BUT ,

We are here for you ...............!

LOVE & HUGS, GrandmomBEV

all my special thoughts as well!!

Re: 1st Visit to CF Clinic on Tuesday

Thank you all for your responses! I feel as armed and ready as one

can be. Wish us luck and please keep us in your " special

thoughts " . Although we are praying for a " negative " CF result, it

is comforting to know that support/informational groups such as this

exist. You all have been very helpful and I will continue

to " think " of you in my daily " thoughts " .

All my best,

Polly-mom to " nearly 9yo " in diagnostic limbo

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

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]

she didn't cry or get upset at all until they turned

> the voltage up for the last couple minutes of the stimulation. She

> had been really brave up until that point, but then her breathing

got

> faster and her eyes started welling up with tears.

The tech would did my son's tests told him to let her know if the

stimulation hurt and she would back off a little. She said it

shouldn't hurt but everyone is different. They were great. My son

said it tingled but didn't really hurt. It was done at Children's in

Boston BTW and he wa 7.

jan