Re: To Sue Holmes

[Guest guest]

Thanks for the information.The doctors do not really know what to tell us

and because Richland, our hospital here in Columbia,SC is a teaching

hospital, I spend the first four days teaching the Drs. When we go in we

are assigned to whatever family doctor and residents are on the rotation.

Sometimes we get Drs. we know and like this last time, we started all over.

Then we have to wait to be referred to the Medical University in ton,

SC. where we have our own GI doctor.I have to give everyone a crash course

in caring for the disabled before we can get to the problem. I think

because we thought this pancreatitis was a one time problem last summer, we

learned just enough about it and then moved on to tackle the next problem

because we know has other surgeries ahead on his hip and his spine.

What I am suspecting and learning from reading all the posts is that it is

for many a recurring problem and although at this point we do not know for

sure, my husband and I are suspecting will get sick again.We know we

could be wrong but when they opened the duct with the ercp, they cannot

guarantee it will stay open and since we have done this twice now the big

??????? are out there.The GI Dr. Cunningham in ton did tell us if

gets sick again we are to transfer him to MUSC for one more ercp

unless the case is so severe he decides otherwise but he did say that after

three ercp's he would talk with us about other surgical options. Our

pediatric developmental physician told us he has only seen one disabled

child with pancreatitis and he finally had to have a portion of his pancreas

taken out. The child was in the hospital for 10 months after the surgery

and the dr. said that the pancreas does not heal easily.Thanks again for all

the information. I have a lot to learn. Sue

To Sue Holmes

> Sue,

> welcome to the group. Sorry to hear that your son has had such terrible

> problems with the pancreatitis. It is possible that he has developed

> chronic pancreatitis. I do know someone who was disabled who got a case

> of pancreatitis, but be she only had the one case. She had spina

> bifida. Unfortunately, a significant portion of people who get

> pancreatitis had no known cause. It is called Idiopathic pancreatitis. I

> also have a pancreatic divisum and it has caused chronic pancreatitis,

> however this is not the case for everyone who has a pancreatic divisum.

> I would recommend speaking to your doctor about the possibility of

> chronic pancreatitis. This group is a very warm and wonderful group of

> people who are willing to help in anyway that they can. Hopefully,

> someone can give you more information. Again, welcome to this group, we

> include a number of caregivers for people who have problems with

> pancreatitis.

>

> Kimber

> hominid2@...

> Pancreatitis Asssociation, Intl.

> California State Chapter Representative.

>

>

> PANCREATITIS SUPPORT NETWORK

> Online e-mail group

>

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[Guest guest]

Sue,

I hope the one pager works. Sorry the doctors out there won't read the

stuff. I don't know why. Mine all do. Might be something you want to

bring up with the member's relation department or patient services,

whatever they call the service who deals with membership, appeals and

grievances. I'd definitely want it brought up officially that this is a

serious issue and can compromise the care of your son. Better to have it

on paper with the officials of the center. They are supposed to read

any paperwork they get and they are at fault for not reading it.

Kimber