Re: hi i am 15 a new to this site i have had chroinc pancreatits for 4 years

[Guest guest]

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> hey i am 15 years old and have been suffering from chronic

>pancreatitis since i was 11 i am in the idopathic group

Hi Melodie,

I'd also like to welcome you to the group, although we all are

certainly sorry about the circumstances that led you to seek us out.

Wanted to let you know that there are a number of others about your

age who are involved in this on-line support group (or their parents

are). I've forwarded your message to a couple of them, so hopefully

you will be hearing back from them soon. They have been having to

deal/cope with the unique challenges of trying to maintain some

semblance of a " normal adolescent life " while dealing with this

condition just as you have, so I'm sure you all would be a great

support for each other.

Cheers,

--Tull

Assistant Moderator

Pancreatitis Association, Int'l

[Guest guest]

Hi Madge,

I have also forwarded your message to a few other folks on the list

who are in similar situations (i.e., children diagnosed with

pancreatitis). Hopefully they will be getting in touch with you

soon, to share their " experience, strength, and hope " . In the

meantime, why don't you tell us something about your son - like

where 'bouts do you live, what procedures the doctors have already

tried, what they think the next step might be, etc.

Glad you found us, but of course, we are sorry about the

circumstances that have you led you here. Just know that there are a

LOT of folks in this group who have been through/are going through

what you and your son are, so you needn't feel " alone " in dealing

with all this.

The PAI (Pancreatitis Association, International) hosts an annual

Symposium on Pancreatitis here in Indianapolis. I just recently

posted some of the handouts/information from this year's Symposium on

the main PAI website. You might find some of it interesting,

especially the information from Dr. Sutherland, who was one of our

speakers this year. He is the " pioneer " in developing the surgical

procedure called " Total Pancreatectomy w/Auto-Islet Cell

Transplant " . A number of our members have had that procedure, and

I'm sure will be glad to share their experiences with it if you ask.

You can download the handouts from the following url:

http://www.pancassociation.org/symposium_2003_handouts.html

We also have a video tape (8 hours!) of most of the presentations

from this year's Symposium available.

--Tull

Assistant Moderator

Pancreatitis Association, Int'l

> I'm sorry to hear that you are having such a hard time with this

disease, I am the mom of a 9 yr old with idiopathic panc. He has been

sick several times with this and I didn't even know what it was at

first. I am trying to learn all I can about it. I acccidently emailed

Tull when I saw his reply to your post. I hope you are feeling better,

[Guest guest]

Melodie,

I am so sorry that you have gotten this disease at such a young age. I

was 15, almost 16 when I had my first diagnosed attack.. Since you are

in the hospital so much, have your doctors thought about having your

pancreas removed and your islet cells transfered to your liver portal

vein (assuming you aren't diabetic yet)? I know that one of the other

teenagers who have this disease has had it done and is doing quite well

and not diabetic. You might want to look into it. The premiere surgeon

who does this is Dr. Sutherland.He works at the University of

Minnesota. Here is his website:

http://www.diabetesinstitute.org/people/sutherland.htm

I am glad that you found our site and I look foward to hearing more from

you. If you want to see my story, go to the following URL:

http://pancassociation.org/storieshome.html

look under the heading of Kimber

Kimber

--

Kimber

Vallejo, CA

hominid2@...

Note: All advice given is personal opinion, not equal to that of a licensed

physician or health care professional.