Re: Questions to

[Guest guest]

Dear ,

The genetic testing that your son will be having soon may find some

kind of genetic link, especially since his father did have one episode

of acute pancreatitis in his lifetime. Or, the testing may be

non-conclusive. Whether he learns anything from this testing or not,

all that would reveal is the cause, but it doesn't solve any of the

future circumstances, except to change the diagnosis from " Idiopathic "

to " Genetic " .

The MRCP that he has scheduled may show that there are other causes

for his CP. If there is blockage or some physical damage that can be

repaired, it may be that there are surgical procedures that would be

of benefit for him.

You asked if his history to date with chronic pancreatitis sounded

like the normal progression of the disease, and my answer to that

would be in the affirmative. His story sounds very similar to many

you can read here.

Since it is a chronically progressive disease, those cycles of pain

will continue to come and go. Effective pain managment will be very

important for your son, and there may need to be changes in this

therapy as time goes on. If you are concerned about his use of

narcotics over a long period of time, I was told by a Pancreatologist

that I would NOT suffer any physical harm if I had to stay on the

regimen of narcotics that I was on at that time, (Duragesic Patch 75

mgs. every 48 hrs. and Oxycodone, 10 mgs. 3 times per day), even if I

had to take it for the remainder of my life.

There are many types of pain managment therapy available that can help

keep a patient functioning, in addition to medication, that your son

may wish to consider, such as acupuncture, antioxidant therapy,

massage, and other forms of therapeudic manipulation.

If he's tried all known types of pain managment and hasn't found any

relief for his pain, and there aren't any surgical procedures that

could help him, transplant surgery can be an option for the right

candidates. Although you say the doctors at his current hospital

don't do transplants, there are a few well known medical centers

throughout the country with highly qualified surgeons who do perform

the total pancreatectomy with auto islet transplant. The first and

foremost of these would be Dr. Sutherland, at the Fairview

Medical Center in Minneapolis, Minnesota, but there are also a few

other hospitals across the country where this particular surgery is

available.

I hope that the ERCP and/or genetic testing will reveal some clues as

to the cause of your son's CP. Once that step has been taken, you may

find that there are other options available for his future comfort.

I'm sure there will be others here that can offer suggestions for you,

too. Please write again with any other questions you may have.

With love, hope and prayers,

Heidi

Heidi H. Griffeth

Bluffton, SC

South Carolina State Rep.

South Eastern Regional Rep., PAI

http://www.pancassociation.org/anthology#Heidi.html

Note: All comments or advice are from personal experiences or opinion

only,and should not be a substitute for consultation with your medical

professional.