Re: Pancreatic disorder or CF

[Guest guest]

Pancreatic disorder wouldn't explain the salty skin and enlarged

lungs. Get away from the doctor that told you this and get an

appointment at a cf clinic with a different doctor. He has classic

symptoms of cf. Even with inconclusive sweat tests (sweat tests are

not 100% accurate, you know) and no identifiable mutations (DNA tests

are not foolproof, especially if they only tested for the 25 most

common mutations), he should still be treated as if he has cf until

it is definately ruled out. By " treated as if he has cf " I mean he

should be taking prescription enzymes, do breathing treatments, have

chest p.t. to prevent lung damage, and be taking specialized vitamins

for cf if his blood tests show low levels of fat-soluble vitamins

(A,D,E, and K.)

No one wants to find out that their child has cf, but no one wants to

wait until years of (somewhat) preventable lung damage is done

because of a needlessly delayed diagnosis, either. CF treatment

slows the progression of the disease, don't wait until this doctor

gets around to figuring out your kid has cf. Go find a doctor that

will get to the root of the problem and will get your child treatment

while waiting on tests to be done.

Good luck!

~

> Hello all...

>

> I have a question that hopefully someone can help me with. We have

> been going through the CF testing. We did 3 sweat tests and the

> DNA. The sweat test came back borderline and the DNA came back

fine

> they said. My 5 year old son had pneumonia and both of his lungs

> colapsed when he was born. No one ever told me why. Ever since he

> has been sick all the time...never really gains any weight ( people

> are always asking me if I ever feed him, but he eats all the

> time)...his skin is salty...his lungs are enlarged...and his stools

> are frequent, large, bulky, and very smelly. He also gets really

> tired after playing in the heat for just 1 hour. He then will come

> in the house for about 1 hour and get his second wind and go back

> out again. This will happen all day long.

> Finally my doctor told me that he probally has pancreatic

> disorder, but no other testing has been done. Does anyone know of

> any other testing that we could do? I am about ready to change

> doctors. The doctor that I have is CF affiliated. Please HELP!!!

[Guest guest]

Hi Angie,

whatever the reason for your son's health problems is, I would ask

for an extended blood check. Getting tired after playing in the heat

can result from elevated loss of electrolytes. It's close to

impossible for us to guess what's wrong with him, but many of us have

dealt with delayed diagnoses and the negative consequences. I would

make it a point to your doc that you won't give up until you have a

diagnosis and a treatment plan for your son. Does he at least receive

enzymes for the pancreatic disorder.

Good Luck!

Torsten, dad of Fiona 6wcf

> Hello all...

>

> I have a question that hopefully someone can help me with. We have

> been going through the CF testing. We did 3 sweat tests and the

> DNA. The sweat test came back borderline and the DNA came back

fine

> they said. My 5 year old son had pneumonia and both of his lungs

> colapsed when he was born. No one ever told me why. Ever since he

> has been sick all the time...never really gains any weight ( people

> are always asking me if I ever feed him, but he eats all the

> time)...his skin is salty...his lungs are enlarged...and his stools

> are frequent, large, bulky, and very smelly. He also gets really

> tired after playing in the heat for just 1 hour. He then will come

> in the house for about 1 hour and get his second wind and go back

> out again. This will happen all day long.

> Finally my doctor told me that he probally has pancreatic

> disorder, but no other testing has been done. Does anyone know of

> any other testing that we could do? I am about ready to change

> doctors. The doctor that I have is CF affiliated. Please HELP!!!

[Guest guest]

Hi Angie,

You probably already know that your son has all the classic symptoms of CF. Do

you know how many mutations your son's been tested for? There are (according to

a nurse at my daughter's CF clinic) just over 1000 that can be tested for at

this point. Apparently, Most centers test for the most common 25 first (Our

center tests for the most common 88 initially) I think My question for the Doc

would be this. " A pancreatic disorder would account for his salty skin and lung

problems, how? " Honestly, I think I would be changing docs about now. Good

luck and keep us up to date.

, Mom of 4 with CF

Pancreatic disorder or CF

Hello all...

I have a question that hopefully someone can help me with. We have

been going through the CF testing. We did 3 sweat tests and the

DNA. The sweat test came back borderline and the DNA came back fine

they said. My 5 year old son had pneumonia and both of his lungs

colapsed when he was born. No one ever told me why. Ever since he

has been sick all the time...never really gains any weight ( people

are always asking me if I ever feed him, but he eats all the

time)...his skin is salty...his lungs are enlarged...and his stools

are frequent, large, bulky, and very smelly. He also gets really

tired after playing in the heat for just 1 hour. He then will come

in the house for about 1 hour and get his second wind and go back

out again. This will happen all day long.

Finally my doctor told me that he probally has pancreatic

disorder, but no other testing has been done. Does anyone know of

any other testing that we could do? I am about ready to change

doctors. The doctor that I have is CF affiliated. Please HELP!!!

[Guest guest]

,

I totally agree with you. I have asked so many questions that I am sick over

it. I have called my nurse/doctor at least 3 times a week since all this

started. I am sick of him never coming up with any information that I am

comfortable with. I am going to call around tomarrow for a second opinion. I

will keep you informed.

Angie Soma

Pancreatic disorder or CF

Hello all...

I have a question that hopefully someone can help me with. We have

been going through the CF testing. We did 3 sweat tests and the

DNA. The sweat test came back borderline and the DNA came back fine

they said. My 5 year old son had pneumonia and both of his lungs

colapsed when he was born. No one ever told me why. Ever since he

has been sick all the time...never really gains any weight ( people

are always asking me if I ever feed him, but he eats all the

time)...his skin is salty...his lungs are enlarged...and his stools

are frequent, large, bulky, and very smelly. He also gets really

tired after playing in the heat for just 1 hour. He then will come

in the house for about 1 hour and get his second wind and go back

out again. This will happen all day long.

Finally my doctor told me that he probally has pancreatic

disorder, but no other testing has been done. Does anyone know of

any other testing that we could do? I am about ready to change

doctors. The doctor that I have is CF affiliated. Please HELP!!!