Re: 7yr old w/cp having auto islet transplant..Need Advise

[Guest guest]

Hi there,

Sorry to hear that you have a 7 year old with CP.

This disease is very variable and individual. The type of pain relief and the

frequency with which it is required is also variable, so don't automatically

assume it means living on morphine. Not everyone requires surgery either.

I have had a total pancreatectomy (without islet cell transplant, as it isn't

often done in UK), and it has greatly improved my quality of life. I am now

diabetic, and require insulin, but still feel that i am better off than before

the surgery. I am a nurse, and i work with sick children. I manage to work

shifts, including nights. So, take comfort from the fact that this disease is

different for everyone.

All the best,

Sue

> Message date : Feb 22 2004, 05:50 PM

> From : " grumpymonkey2000 "

> To : pancreatitis

> Copy to :

> Subject : 7yr old w/cp having auto islet transplant..Need

Advise

> Hi to all,

>

> We have a 7 yr. old diagnosed with cp at the age of 3.5 yrs, with

> idiopathic cp. The IVGTT test (glucose tolerance) shows her insulin

> production down less than 50% from last year, meaning that she can

> be a Type 1 diabetes at any time. Her CT scan also shows

> calcification thru out the pancreas, as well as shrinkage.

> We are seeking urgent advice on the following matter:

> Does anyone know whether everyone with pancreatitis have to either

> go through a pancreatectory (or Puestow) or live on morphine (or

> other pain drugs). In other words, are there people out there with

> cp that are not in pain, but still exhibit the other symptoms of cp

> (i.e.: calcification with little or no pain).

>

> One of the options we are considering is an auto islet cell

> transplant with a partial pancreatectomy.

> If anyone is going thru a same situation, or can add to this, please

> reply back.

>

> Thank you

>

>

>

>

>

>

>

>

[Guest guest]

Grumpy Monkey,

I'm very sorry to hear about your daughter. It's horrible to think of a child

her

age having to go through what many of us do with this disease.

In answer to your question about whether you think it's possible for someone

to go without powerful pain medication after the pancreas has burned out, I'll

tell you about myself.

I had (have) chronic pancreatitis with multiple pseudocysts for a year and a

half. Then in January of 2003, I began getting ill, rapidly losing 30 pounds

and suffering from malabsorption problems. I went into the hospital a year

ago suffering with diabetic ketoacidosis, with blood glucose levels over 1,000.

Once there, I was told that my pancreas had burned out and that I had

become a type 1 brittle diabetic. After I was released from the hospital, I

experienced two months of absolutely no pain whatsoever. I was completely

off all pain medication. Unfortunately, I was so busy learning how to cope

with the new diabetes and adjusting to the necessary blood checks and

injections that I didn't have much time to enjoy those pain-free days.

Then I suddenly noticed that the pain had resumed and after having a ct-scan

done, it was found that my pseudocysts, which had resolved previously down

to less than 2 cm., had become inflamed again and swollen up to over 6 cm.

As a result, I am back on full time pain medication.

My doctor feels that if I didn't have the pseudocysts that my pain would be

gone entirely. I'm inclined to agree with him, based on my earlier

experiences. I again look forward to the time that my pseudocysts resolve.

Yet there is a definite downside to this, as you are already aware. To explain

it quite simply, once a person achieves full burn-out of the pancreas, their

endocrine function is also damaged beyond repair, causing the loss of insulin

production. The result is diabetes, most frequently type 1, and often brittle.

This happened to me in light speed, while I know of others that have been in

the advanced stages of CP for years and years, 10-20 or more, awaiting full

burn-out and that talked about cessation of pain. You have no way of

determining WHEN this could happen, and it could not happen at all.

You need to consider this when you are weighing all the other options. I

personally regret that I did not have a TP with Auto Islet Transplantation,

when there was time. Yet, this is a very personal and difficult decision (hence

my regrettable hesitation), and should not be taken lightly.

It must be very difficult for a parent to be placed in the postion where they

have to chose the path in life that their child must follow, and my heart goes

out to you in your quest to find the right solution for your daughter. I will

pray

for your guidance to find the answer that will prove to be in the best interests

of your child.

With hope and prayers,

Heidi

Heidi H. Griffeth

http://panassociation.org/anthology.htm#heidi

South Carolina

SC & SE Regional Rep.

PAI, Intl.

Note: All comments or advice are personal opinion only, and

should not be substituted for professional medical consultation.