For Mikki and her Grandson.. : )

September 23, 2003

Subj: G-son with pancreatitis

Date: 9/22/2003 5:24:45 PM Eastern Standard Time

From: <A HREF= " mailto:mikkiharper@... " >mikkiharper@...</A>

To: <A HREF= " mailto:Brwnbare9@... " >Brwnbare9@...</A>

Sent from the Internet (Details)

MIKKI I SENT THIS TO THE SITE SO THAT YOU HAD MY RESPONSE FOR SOME REASON

EVERYTIME I SENT IT TO YOUR EMAIL I GOT A FATAL ERROR.

Dear Peg,

my grandson, whom I am raising was diagnosed at ten with Idopathic chronic

pancreatitis. We have had him on an extremly low fat (5-10 grams ) for three

years. Since following the diet closely there have been no attacks. They have

not found the cause. It has taken us all that time to get his amylase down to

normal and his lipase down to700. What exactly did your son have? Has the

Pancreatectomy and Islet Cell transplant made a difference? Is there any thing

on the negetive side like diabetes that is a trade off to this proceedure?

Would you recomend it?

Would love to here your response.

Thank You,

Mikki Sage Harper

Hey there Mikki,

My name is Peg, my sons name is Brandan, we are from Massachusetts. I am

so saddened to hear of yet another child with this horrific illness. My son

has suffered many years with what was called " STOMACH " aches. He was also

thought for years to be lactose intolerant. If you want to read his whole story

here is the link <A

HREF= " http://pancassociation.org/anthology.htm#brandan " >Personal Stories</A>.

Brandans disease had got to the stage

where his quality of life was non-existing, his days where spent lying on the

couch or in bed with enormous amounts of medication to make him comfortable at

times he was being fed by TPN(central line to keep him nourished) when he did

not have this line we relied on slimfast to keep him nourished. He has not

been able to attend school for 3 years, this is his senior year and because of

his residual pain as we call it and the fatigue he still feels he still has not

been able to attend. BUT he is able to eat now, he no longer endures the

horrific attacks he once did, and also his blood sugars remain normal, although

he

is not where he wants to be he is better than he was a year ago. We are

presently working with his team of Drs. to find the source of the " residual

pain "

as I have come to call it. It is now believed that it could be caused by his

spleen, it was not removed during the surgery and normally isn't in children

because of the belief it helps with infection. This surgery for my son Brandan

was his second chance, although we knew at the time we could be trading

PAINcreatitis(as I call it) for diabetes, we knew ultimately the damage being

done

by his repeated attacks could result in diabetes anyway, so we had to take

this chance. Sometimes the road we are traveling following the pancreatectomy

can be just as frustrating as the road with the disease, but we know for our son

it was the right choice. My sons original diagnosis was Idiopathic Chronic

Pancreatitis with Pancreas divisum. Although he had the divisum they were not

convinced it was the cause of his pancreatitis because 1 and 5 people have

this abnormality that never affects them, so the diagnosis was Idiopathic.

Besides it no longer mattered why Brandan had it but how do we get rid of it.

If

your grandson is not having any more attacks and his pain can be controlled

without pain medication, and his quality of life is good, then all you can do is

what your doing, continue to take it " ONEDAY AT A TIME. " I hope this has

helped and I will try and answer your questions the best I can. I look forward

to hearing from you in the future, as always keeping you and yours in our

thoughts and prayers...Keep smiling (cuz sometimes its all one can do!)..TTFN..

:

)

Peg Bates

Brwnbare9@...

Massachusetts State Chapter Rep.

Pancreatitis Association Intl.

" It truly is amazing how one person can make a difference. "

September 23, 2003