RE: Our sweat test is next week

[Guest guest]

From what I have heard, the sweat test is likely to show if she has CF

or not. There are cases of people with low sweat test results who have

CF, although it isn't the norm. I'd say if your daughter has a low

sweat test and you're still not convinced, have a blood test done. The

weight thing isn't really relevant because people with CF can have

varying amounts of pancreatic sufficiency, from it working just fine to

not working at all. The stools- well, my daughter didn't have mucous in

her stools before she was diagnosed- but they were smelly, oily, and

usually runny.

In short, you could do the sweat and the blood test and still not have a

convincing result, although the odds are against that happening. Most

likely one or both will give you the answer either way. Good luck.

Elias

Our sweat test is next week

Hi

I am , mom to A.J (3) and (1). I am taking my

daughter, , to have a sweat test done next week. She is 18

months old and I coming here to get some input and advice, if

possible.

has had chronic cough her whole life and has had two wheezing

episodes this year. Currently on nebs with xeopenex and pulmicort.

She has a history of very frequent ear infections.

In her first year, she had exteme bouts of constipation followed by

bloody and mucousy bowels which resolved on their own. This was then

followed by intermittent bouts of prolonged diahhrea which also

resolved on its own. She is now currently experiencing extended

bouts of foul smelling stools, up to 7 times a day. While this has

happened before for weeks at a time, it goes away on its on and then

reappears later. Not watery or mucousy.

has a large appetite but has plenty of energy and is 25th for

weight and 60th for height (has stayed steady on those curves).

Based on this information, her ped agreed that we need to r/o Cystic

Fibrosis. We both feel it is unlikely but I was hoping to get some

honest input here. What experiences have you all had? From what I

have gathered, the symptoms can be so varied and there are really no

absolutes with CF. Does it matter that I have never tasted salty

skin on her? What are the chances she may get a negative sweat test

but still have CF? Does anyone think her symptons truly sound like a

CF pattern? Do the stools always have to be mucousy? And does it

matter that she has stayed on her curve for growth?

I was also hoping I could some input regarding the sweat test? What

do I need to know and what should I do if the test is negative? We

still have these symptoms to deal with.

Thanks again, and I appreciate any help.

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

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]

My experience, and my adult's (as a child) was totally painless; just a lot of

salty water, a gauze pad and a stimulant to the sweat gland; the salt is the

patient's! If done correctly, there should be no pain; my score was 150+

and my child's as well--fortunately that is not a predictor of severity of the

disease, just the beginning of a clear diagnosis. Best of luck, but bear in

mind, that given her medical history, cystic fibrosis might NOT be the worst

thing she could have, and early treatment and intervention makes a lot of

difference! Highest hopes for you and your daughter, and thank you for joi

ning us; we are never happy to hear of another cf diagnosis, but always hap

py to have more good people on our list. Love, n Rojas, wcf, mom of

2 cf carriers and 1 adult wcf. . .

Our sweat test is next week

Hi

I am , mom to A.J (3) and (1). I am taking my

daughter, , to have a sweat test done next week. She is 18

months old and I coming here to get some input and advice, if

possible.

has had chronic cough her whole life and has had two wheezing

episodes this year. Currently on nebs with xeopenex and pulmicort.

She has a history of very frequent ear infections.

In her first year, she had exteme bouts of constipation followed by

bloody and mucousy bowels which resolved on their own. This was then

followed by intermittent bouts of prolonged diahhrea which also

resolved on its own. She is now currently experiencing extended

bouts of foul smelling stools, up to 7 times a day. While this has

happened before for weeks at a time, it goes away on its on and then

reappears later. Not watery or mucousy.

has a large appetite but has plenty of energy and is 25th for

weight and 60th for height (has stayed steady on those curves).

Based on this information, her ped agreed that we need to r/o Cystic

Fibrosis. We both feel it is unlikely but I was hoping to get some

honest input here. What experiences have you all had? From what I

have gathered, the symptoms can be so varied and there are really no

absolutes with CF. Does it matter that I have never tasted salty

skin on her? What are the chances she may get a negative sweat test

but still have CF? Does anyone think her symptons truly sound like a

CF pattern? Do the stools always have to be mucousy? And does it

matter that she has stayed on her curve for growth?

I was also hoping I could some input regarding the sweat test? What

do I need to know and what should I do if the test is negative? We

still have these symptoms to deal with.

Thanks again, and I appreciate any help.

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

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]

Thanks for the kind reply and information. I really appreciate it. I

called this morning and scheduled her sweat test for Wednesday at 10

A.M.

I guess all we can do now is wait.

Thanks, again!

[Guest guest]

Thanks so much for all of the input. I do appreciate it.

While I find a dx of CF unlikely for , I have been yet unable

to find any other information online that fits the symptoms she's

been having. I suppose she may just have some unrelated difficulties

if its not CF.

We scheduled our sweat test for Wednesday at 10 A.M. and should know

for sure within 2-3 days afterwards. I guess all I can do is wait

and we find out for sure, then.

Thanks again for your input.

> My experience, and my adult's (as a child) was totally painless;

just a lot of

> salty water, a gauze pad and a stimulant to the sweat gland; the

salt is the

> patient's! If done correctly, there should be no pain; my score

was 150+

> and my child's as well--fortunately that is not a predictor of

severity of the

> disease, just the beginning of a clear diagnosis. Best of luck,

but bear in

> mind, that given her medical history, cystic fibrosis might NOT be

the worst

> thing she could have, and early treatment and intervention makes a

lot of

> difference! Highest hopes for you and your daughter, and thank you

for joi

> ning us; we are never happy to hear of another cf diagnosis, but

always hap

> py to have more good people on our list. Love, n Rojas, wcf,

mom of

> 2 cf carriers and 1 adult wcf. . .

> Our sweat test is next week

>

>

> Hi

>

> I am , mom to A.J (3) and (1). I am taking my

> daughter, , to have a sweat test done next week. She is 18

> months old and I coming here to get some input and advice, if

> possible.

>

> has had chronic cough her whole life and has had two

wheezing

> episodes this year. Currently on nebs with xeopenex and

pulmicort.

> She has a history of very frequent ear infections.

>

> In her first year, she had exteme bouts of constipation followed

by

> bloody and mucousy bowels which resolved on their own. This was

then

> followed by intermittent bouts of prolonged diahhrea which also

> resolved on its own. She is now currently experiencing extended

> bouts of foul smelling stools, up to 7 times a day. While this

has

> happened before for weeks at a time, it goes away on its on and

then

> reappears later. Not watery or mucousy.

>

> has a large appetite but has plenty of energy and is 25th

for

> weight and 60th for height (has stayed steady on those curves).

>

> Based on this information, her ped agreed that we need to r/o

Cystic

> Fibrosis. We both feel it is unlikely but I was hoping to get

some

> honest input here. What experiences have you all had? From what

I

> have gathered, the symptoms can be so varied and there are really

no

> absolutes with CF. Does it matter that I have never tasted salty

> skin on her? What are the chances she may get a negative sweat

test

> but still have CF? Does anyone think her symptons truly sound

like a

> CF pattern? Do the stools always have to be mucousy? And does

it

> matter that she has stayed on her curve for growth?

>

> I was also hoping I could some input regarding the sweat test?

What

> do I need to know and what should I do if the test is negative?

We

> still have these symptoms to deal with.

>

> Thanks again, and I appreciate any help.

>

>

>

>

>

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

> 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]

Hi ,

Welcome to our group but I hope you don't have to stay. That is I hope

doesn't have cf. Even if she doesn't you're welcome to stay if you like, as her

health issues are similar in any case. To try and answer some of your

questions, no it doesn't matter if she doesn't taste salty. Sometimes pwcf

(people with cf) don't taste salty. I think her symptoms do sound as if she

could have cf. No their stools don't have to be mucusy. Actually 15% or so of

pwcf don't have digestive problems. It is good in any case that she has stayed

on her growth curve. The sweat test is easy, usually painless (it should be, I

have heard a rare instance where it wasn't done properly and burned the child's

skin). If is having a sweat test make sure you are having it done at a

CF Center. To find out if where you are going is a CF Center you can go to

www.cff.org . They have a list of CF Centers by state. There is also a vast

amount of information on cf there. If she tests negative on the sweat test she

most likely doesn't have cf if you have the test done at a CF Center. To be

safe she may need a genetic test. Several places do them, a company called

Ambry does a very extensive test. Also s Hopkins and I believe Toronto

General. You don't have to travel to have the genetic test done, they can just

send her blood sample out. Well I hope I have helped and I also will hope it's

not cf. But if it is it's not the worst thing in the world. My daughter

is 20 and is doing very well. She was diagnosed by a sweat test, and had her

times of illness but is doing well now. She had a rough time through puberty

but I don't know if that is a typical.

anyway, welcome again and good luck. Let us know how it turns out.

love,

mom of Nick age 21 nocf and age 20 wcf

from Orange County CA

[Guest guest]

Thanks so much . Your post was very informative.

Unfortunately, it appears we are not having her tested at a CF

center. I am going to a very reputable hospital, however, with a

program dedicated to CF. I am little confused on that as the doctor

made a point to be sure I was going to this specific hospital saying

this is where they do CF testing. Hmmm?

I've been trying really hard to stay upbeat about this and convince

myself this is really just routine and very unlikely that she does

have CF. I hope that this sweat test is very conclusive and not

borderline, which will just leave me wondering and worried.

I am also really glad to hear your daughter is doing really well. It

sounds like CF research and treatment has really come a long way and

one can only hope it is just getting better and better every day.

My appt. has been set for Wednesday at 10 A.M. with the results

coming in 2 -3 days later. I will be sure to let everyone know!

Thanks, again

> Hi ,

> Welcome to our group but I hope you don't have to stay. That is I

hope doesn't have cf. Even if she doesn't you're welcome to

stay if you like, as her health issues are similar in any case. To

try and answer some of your questions, no it doesn't matter if she

doesn't taste salty. Sometimes pwcf (people with cf) don't taste

salty. I think her symptoms do sound as if she could have cf. No

their stools don't have to be mucusy. Actually 15% or so of pwcf

don't have digestive problems. It is good in any case that she has

stayed on her growth curve. The sweat test is easy, usually painless

(it should be, I have heard a rare instance where it wasn't done

properly and burned the child's skin). If is having a sweat

test make sure you are having it done at a CF Center. To find out if

where you are going is a CF Center you can go to www.cff.org . They

have a list of CF Centers by state. There is also a vast amount of

information on cf there. If she tests negative on the sweat test she

most likely doesn't have cf if you have the test done at a CF

Center. To be safe she may need a genetic test. Several places do

them, a company called Ambry does a very extensive test. Also s

Hopkins and I believe Toronto General. You don't have to travel to

have the genetic test done, they can just send her blood sample out.

Well I hope I have helped and I also will hope it's not cf. But if it

is it's not the worst thing in the world. My daughter is 20

and is doing very well. She was diagnosed by a sweat test, and had

her times of illness but is doing well now. She had a rough time

through puberty but I don't know if that is a typical.

>

> anyway, welcome again and good luck. Let us know how it turns out.

>

> love,

>

> mom of Nick age 21 nocf and age 20 wcf

> from Orange County CA

>

>

>

>