Deb - Cystic Fibrosis & Pancreatitis

August 6, 2004

Hi, Deb.

I think I posted this message twice. Sometimes I have a hard time

figuring out the way the board works, so here it is again.

My son had a normal childhood - maybe two cases of light pneumonia,

but no more than the average child. We had no idea anything was

wrong with him. Then, at age 10, he became diabetic. STill, we just

thought that was the only problem. Three years later, he started

having the pancreatitis attacks about once a month. He would be off

food and water about two days and would bounce back really quickly.

The doctors here in Oklahoma were stumped, so we headed for Mayo

where they diagnosed him with cystic fibrosis at age 14. They said

in rare cases, CF can present itself with pancreatitis. They said

the mucus gets stuck in the pancreas ducts and causes inflamation.

After about 2 1/2 years of attacks, he had enough. We traveled back

to Minnesota to Dr. Sutherland to have his pancreas removed. He was

not a canidate for the islet cell transplant because he was already

diabetic, but Dr. Sutherland was the only surgeon we found that had

operated on kids. It was a year last March since his surgery. He

is doing very well. He has some phantom pain from time to time, but

I guess that is common. When it happens, he usually takes some

Tylenol PM and stays in bed for about a day and then he is better.

At first, we had a hard time getting his enzymes adjusted, but once

we did, he does very well. He is on an insulin pump (he had that

before he had his pancreas removed)which gives him a lot of freedom

from being diabetic-it is a wonderful little piece of technology.

He sees a pulminologist in OKC, but only has to go every 6 months.

His lungs are great, in fact he doesn't even have to do an inhaler.

It is the strangest thing, but the DNA and sweat tests say he has

CF. It is a rare mutation, though.

Do you have any lung problems? There are a couple of others on the

board that I have seen over the last couple of years that have cf

and pancreatitis. I found them by just typing in Cystic Fibrosis &

Pancreatitis in the Subject line. I can't remember who they were,

but it did help to visit with them on the message board.

My e-mail address is patriciajross@s... if you would like

to e-mail me direct.

Take care,

Ross

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