Hereditary Pancreatitis

[Guest guest]

Hello out there I have an 11 year old girl who has been diagnosed with

hereditary pancreatitis at the age of two. She had a peustow at the

age of 5 and it seemed to work for a few years but now we are back in

the trend of back to the hospitol every few months. We are treating

with Dil. 4mg prn. We have been to see Dr. Adam Silvka at Pitt he is

in with Dr. Whitcomb. I think they are great Dr... just wanted to know

if anyone out there has any additional info..

Thanks

Tim

[Guest guest]

I was diagnosed with chronic pancreatitis when I was eight years old.

I never had surgery on my pancreas until 14. I was well for some time

after that, but then the hospital stays began again at a increasing

rate at the age of 18. When I was 21 I went and saw Dr. Sutherland at

the University of Minnesota. He performed what is called a total

pancreatectomy with auto islet cell transplant. This is where they

remove the pancreas and then take the islet cells and seperate them

from the exocrine tissue and retransplant them into the portal vein of

the liver. Since that time I have been completely healthy for over

two years. This was an excellent choice for me. Perhaps it is

something you could look into.

Crystal Galloway

[Guest guest]

My son was diagonosed with pancreatitis at the age of 14 months. He

is now 28 months old. I believe it to be hereditary because of my

family history. My mother, sister, nephew, uncle, and myself have all

been diagnosed with pancreatitis. My nephew had genetic testing done a

few months ago which confirmed his to be hereditary. My son does not

seem to be in a lot of pain when he has an attack. How often does your

doctor have to be treated/hopitalized?

Thanks

[Guest guest]

My son, 11, was hospitalized most of this past January and February. He

had the Frey procedure in February and has been much improved since

then. He has some bouts of pain, but only one that landed him in the

hospital for outpatient treatment only.

At this stage, when my son has attacks, he can manage them. We are

experimenting with his diet and trying to make it as low fat as he can

tolerate.

>>> mindilacy@... 6/1/2005 3:59:14 PM >>>

My son was diagonosed with pancreatitis at the age of 14 months. He

is now 28 months old. I believe it to be hereditary because of my

family history. My mother, sister, nephew, uncle, and myself have all

been diagnosed with pancreatitis. My nephew had genetic testing done a

few months ago which confirmed his to be hereditary. My son does not

seem to be in a lot of pain when he has an attack. How often does your

doctor have to be treated/hopitalized?

Thanks