Re: My Daughter has had Chronic Pancreatitis since she was five!

[Guest guest]

Thanks Chuck,

I will look into this information that you gave me. So, do you

believe that this kind is fixable?

> >Hi ,

> >

> > I am glad to hear that an ERCP will be performed instead of

surgery.

> > Kasey has had four ERCP's done, but when they get in there they

can't

> > seem to find anything wrong. Dr. Howle said that hopefully just

having

> > the tubes going through the duct work that might help her a

little. Well,

> > it didn't and never has, but they keep trying. Dr. Fox from the

Childrens

> > Hospital in Boston has performed one on her too, but he said it

was

> > unsuccessful, he couldn't get in...well that was a wasted trip

for us

> > (about a 4 -5 hour drive)

>

> Chuck Sullivan

> chuck@s...

[Guest guest]

,

I sure don't have any more suggestions for Kasey. It sounds like they have

covered all the bases as far as the tests go. It is so scary when it is your

child. My daughter has juvenile rheumatoid arthritis (which seems to be in

complete remission at the time). I worry so about her. I hate to see her in

pain. I pray that she never has to go through problems with her panc!

I'm sure some of the other, more experienced members may have suggestions for

you. Please know that Kasey is in my thoughts and prayers!

[Guest guest]

,

I sure don't have any more suggestions for Kasey. It sounds like they have

covered all the bases as far as the tests go. It is so scary when it is your

child. My daughter has juvenile rheumatoid arthritis (which seems to be in

complete remission at the time). I worry so about her. I hate to see her in

pain. I pray that she never has to go through problems with her panc!

I'm sure some of the other, more experienced members may have suggestions for

you. Please know that Kasey is in my thoughts and prayers!

[Guest guest]

,

she sounds like me at sixteen. I have an acute attack about

once a year. Then be perfectly fine (until my attack in

January 2001, then I started having pain every day). I'd

only be in for a few days to a week at most. I started out

with only acute attacks, but eventually it caused my

pancreatitis to become chronic. I have a rare birth defect

called a pancreatic divisum (divided pancreatitic ducts).

Did they test for this? An ERCP can determine this. If they

did and she's fine, then she may be one of those people who

have idiopathic reocurrent pancreatitis. It may turn chronic

at some point in her life. I became chronic in 1997 (I had

my first diagnosed attack in 1986). The doctors now think I

had two attacks when I was about four or so. They just

didn't know to test me for pancreatitis in 1974. Even now

they rarely check children for this.

Kimber

--

Kimber

Vallejo, CA

hominid2@...

Southwest Representative

Pancreatitis Association, International

[Guest guest]

,

she sounds like me at sixteen. I have an acute attack about

once a year. Then be perfectly fine (until my attack in

January 2001, then I started having pain every day). I'd

only be in for a few days to a week at most. I started out

with only acute attacks, but eventually it caused my

pancreatitis to become chronic. I have a rare birth defect

called a pancreatic divisum (divided pancreatitic ducts).

Did they test for this? An ERCP can determine this. If they

did and she's fine, then she may be one of those people who

have idiopathic reocurrent pancreatitis. It may turn chronic

at some point in her life. I became chronic in 1997 (I had

my first diagnosed attack in 1986). The doctors now think I

had two attacks when I was about four or so. They just

didn't know to test me for pancreatitis in 1974. Even now

they rarely check children for this.

Kimber

--

Kimber

Vallejo, CA

hominid2@...

Southwest Representative

Pancreatitis Association, International

[Guest guest]

Hi Kimber,

Kasey has had several ERCP's and nothing was ever mentioned about

the " divisum " so I am assuming that she doesn't have that. She had

her first " acknowledged " attack back in 1996 (they figured that it

was just brought on by a virus) and then turned chronic in 1997. She

is hospitalized about five to ten times a year on the average

(sometimes more, and sometimes less) and her specialist did call

it " idiopathic " . She is a very brave child that has to live this big

grown-up life. She is a real trooper though, but I guess you would

have to be to deal what everyone here deals with on a daily basis. My

thoughts and prayers go out to all of you!

> ,

> she sounds like me at sixteen. I have an acute attack about

> once a year. Then be perfectly fine (until my attack in

> January 2001, then I started having pain every day). I'd

> only be in for a few days to a week at most. I started out

> with only acute attacks, but eventually it caused my

> pancreatitis to become chronic. I have a rare birth defect

> called a pancreatic divisum (divided pancreatitic ducts).

> Did they test for this? An ERCP can determine this. If they

> did and she's fine, then she may be one of those people who

> have idiopathic reocurrent pancreatitis. It may turn chronic

> at some point in her life. I became chronic in 1997 (I had

> my first diagnosed attack in 1986). The doctors now think I

> had two attacks when I was about four or so. They just

> didn't know to test me for pancreatitis in 1974. Even now

> they rarely check children for this.

>

> Kimber

>

> --

> Kimber

> Vallejo, CA

> hominid2@c...

> Southwest Representative

> Pancreatitis Association, International

[Guest guest]

Hi Kimber,

Kasey has had several ERCP's and nothing was ever mentioned about

the " divisum " so I am assuming that she doesn't have that. She had

her first " acknowledged " attack back in 1996 (they figured that it

was just brought on by a virus) and then turned chronic in 1997. She

is hospitalized about five to ten times a year on the average

(sometimes more, and sometimes less) and her specialist did call

it " idiopathic " . She is a very brave child that has to live this big

grown-up life. She is a real trooper though, but I guess you would

have to be to deal what everyone here deals with on a daily basis. My

thoughts and prayers go out to all of you!

> ,

> she sounds like me at sixteen. I have an acute attack about

> once a year. Then be perfectly fine (until my attack in

> January 2001, then I started having pain every day). I'd

> only be in for a few days to a week at most. I started out

> with only acute attacks, but eventually it caused my

> pancreatitis to become chronic. I have a rare birth defect

> called a pancreatic divisum (divided pancreatitic ducts).

> Did they test for this? An ERCP can determine this. If they

> did and she's fine, then she may be one of those people who

> have idiopathic reocurrent pancreatitis. It may turn chronic

> at some point in her life. I became chronic in 1997 (I had

> my first diagnosed attack in 1986). The doctors now think I

> had two attacks when I was about four or so. They just

> didn't know to test me for pancreatitis in 1974. Even now

> they rarely check children for this.

>

> Kimber

>

> --

> Kimber

> Vallejo, CA

> hominid2@c...

> Southwest Representative

> Pancreatitis Association, International

[Guest guest]

Hi Kimber,

Kasey has had several ERCP's and nothing was ever mentioned about

the " divisum " so I am assuming that she doesn't have that. She had

her first " acknowledged " attack back in 1996 (they figured that it

was just brought on by a virus) and then turned chronic in 1997. She

is hospitalized about five to ten times a year on the average

(sometimes more, and sometimes less) and her specialist did call

it " idiopathic " . She is a very brave child that has to live this big

grown-up life. She is a real trooper though, but I guess you would

have to be to deal what everyone here deals with on a daily basis. My

thoughts and prayers go out to all of you!

> ,

> she sounds like me at sixteen. I have an acute attack about

> once a year. Then be perfectly fine (until my attack in

> January 2001, then I started having pain every day). I'd

> only be in for a few days to a week at most. I started out

> with only acute attacks, but eventually it caused my

> pancreatitis to become chronic. I have a rare birth defect

> called a pancreatic divisum (divided pancreatitic ducts).

> Did they test for this? An ERCP can determine this. If they

> did and she's fine, then she may be one of those people who

> have idiopathic reocurrent pancreatitis. It may turn chronic

> at some point in her life. I became chronic in 1997 (I had

> my first diagnosed attack in 1986). The doctors now think I

> had two attacks when I was about four or so. They just

> didn't know to test me for pancreatitis in 1974. Even now

> they rarely check children for this.

>

> Kimber

>

> --

> Kimber

> Vallejo, CA

> hominid2@c...

> Southwest Representative

> Pancreatitis Association, International

[Guest guest]

,

not every doctor who can do an ERCP knows what to look for

in finding a pancreas divisum. I had to got to a GI doctor

that specialized in doing ERCP and diagnosing pancreas

divisum, even though my regular GI knew how to do an ERCP.

Basically, they may have missed it. I would ask for

confirmation that she doesn't have it and not just assume

that they checked for it or knew what they were looking for.

I was listed as idiopathic till my divisum was they

confirmed it as the cause, even though they already new I

had the divisum. What it does is set up a vicious loop. My

ducts are two separate ducts too small and too close

together. One was closed off a birth. whenever the enzymes

backed up in that duct it blew up and then blocked off the

other duct. Then the enzymes were stuck in the pancreas and

then they started to digest itself. Then I'd have an attack

of pancreatitis. Once I was over that, the cycle began

again.

Yes, Kasey must be trooper to have lived through all of

this. It's hard enough on adults, let alone children.

Kimber

--

Kimber

Vallejo, CA

hominid2@...

Southwest Representative

Pancreatitis Association, International

[Guest guest]

,

not every doctor who can do an ERCP knows what to look for

in finding a pancreas divisum. I had to got to a GI doctor

that specialized in doing ERCP and diagnosing pancreas

divisum, even though my regular GI knew how to do an ERCP.

Basically, they may have missed it. I would ask for

confirmation that she doesn't have it and not just assume

that they checked for it or knew what they were looking for.

I was listed as idiopathic till my divisum was they

confirmed it as the cause, even though they already new I

had the divisum. What it does is set up a vicious loop. My

ducts are two separate ducts too small and too close

together. One was closed off a birth. whenever the enzymes

backed up in that duct it blew up and then blocked off the

other duct. Then the enzymes were stuck in the pancreas and

then they started to digest itself. Then I'd have an attack

of pancreatitis. Once I was over that, the cycle began

again.

Yes, Kasey must be trooper to have lived through all of

this. It's hard enough on adults, let alone children.

Kimber

--

Kimber

Vallejo, CA

hominid2@...

Southwest Representative

Pancreatitis Association, International

[Guest guest]

,

not every doctor who can do an ERCP knows what to look for

in finding a pancreas divisum. I had to got to a GI doctor

that specialized in doing ERCP and diagnosing pancreas

divisum, even though my regular GI knew how to do an ERCP.

Basically, they may have missed it. I would ask for

confirmation that she doesn't have it and not just assume

that they checked for it or knew what they were looking for.

I was listed as idiopathic till my divisum was they

confirmed it as the cause, even though they already new I

had the divisum. What it does is set up a vicious loop. My

ducts are two separate ducts too small and too close

together. One was closed off a birth. whenever the enzymes

backed up in that duct it blew up and then blocked off the

other duct. Then the enzymes were stuck in the pancreas and

then they started to digest itself. Then I'd have an attack

of pancreatitis. Once I was over that, the cycle began

again.

Yes, Kasey must be trooper to have lived through all of

this. It's hard enough on adults, let alone children.

Kimber

--

Kimber

Vallejo, CA

hominid2@...

Southwest Representative

Pancreatitis Association, International

[Guest guest]

Hi Kimber,

You are absolutely right! I would be a fool if I didn't talk to

the doctors about the divisum. That is a given! But, I am just trying

to not get my hopes up in either direction, you know? Her first ERCP

was done by Dr. Howle, and I was told that he was one of the best in

this whole country. He explained a lot of stuff to us that day, and I

am embarrassed to admit, that I didn't understand a lot of it. We

were quite overwhelmed at the time since this was all so new to us,

and that day was especially hard because it was the first time that

she had ever been put " under " . Then we had Dr. Fox from Boston, and

her specialists in Portland, ME doing them and always getting the

same results. Thanks for the heads up and I will be going to see the

doctor in the near future.

> ,

> not every doctor who can do an ERCP knows what to look for

> in finding a pancreas divisum. I had to got to a GI doctor

> that specialized in doing ERCP and diagnosing pancreas

> divisum, even though my regular GI knew how to do an ERCP.

> Basically, they may have missed it. I would ask for

> confirmation that she doesn't have it and not just assume

> that they checked for it or knew what they were looking for.

> I was listed as idiopathic till my divisum was they

> confirmed it as the cause, even though they already new I

> had the divisum. What it does is set up a vicious loop. My

> ducts are two separate ducts too small and too close

> together. One was closed off a birth. whenever the enzymes

> backed up in that duct it blew up and then blocked off the

> other duct. Then the enzymes were stuck in the pancreas and

> then they started to digest itself. Then I'd have an attack

> of pancreatitis. Once I was over that, the cycle began

> again.

>

> Yes, Kasey must be trooper to have lived through all of

> this. It's hard enough on adults, let alone children.

> Kimber

>

> --

> Kimber

> Vallejo, CA

> hominid2@c...

> Southwest Representative

> Pancreatitis Association, International

[Guest guest]

,

I can understand. you don't want to be disappointed again if

there is no clear answer.

It took several years to make a difinitive cause on mine. 3

years ago, I found out a cousin of my mother's has a

daughter with the exact same problem as me. So now I know

which side of my family I got this from. Also, we were able

to tell her to have her daughter checked earlier for the

divisium and give her some advice on this so she doesn't end

up as bad as me. I wish I could make things better for

Kasey. She is indeed a very brave child to have gotten

through this for so long. Has she had a trypsinogen test?

That test also is a good indicator of pancreas involvement.

I'm just trying to see if there are any possible tests they

missed. You never know, there might be one. I hope I've

been of some help.

Kimber

--

Kimber

Vallejo, CA

hominid2@...

Southwest Representative

Pancreatitis Association, International

[Guest guest]

In a message dated 9/3/02 3:46:01 PM Eastern Daylight Time,

angelag@... writes:

>

>

> Hi Everyone,

>

> My name is , and thanks to my best friend, I just found

> this group today. I can't believe it!

>

> My Daughter, Kasey, is eleven years old and has been in and out

> of " attacks " since she was five. I do not know everything about the

> disease, but I do know quite a bit.

DEAR ANGELA, I AM VERY SORRY ABOUT KASEY. I WANT TO GIVE YOU THE NAME OF THE

DOCTOR WHO CURED ME. HE IS A SURGEON IN MN. I WILL GIVE YOU HIS E-MAIL

ADDRESS SO YOU CAN DISCUSS KASEY'S PROBLEM WITH HIM. HE IS VERY NICE AND

WILL BE HAPPY TO ANSWER ANY OF YOUR QUESTIONS. TWO OTHER CHILDREN FROM OUR

SUPPORT GROUP HAVE BEEN TO MN AND NOW ARE FREE OF PANCREAS ATTACKS. HE IS

THE ONLY DOCTOR I WOULD TRUST TO HELP WITH KASEY'S PROBLEM. HIS NAME IS DR.

SUTHERLAND. HE WORKS AT THE FAIRVIEW UNIVERSITY MEDICAL CENTER IN

MINNEAPOLIS MINNESOTA. HE IS A WONDERFUL MAN AND A GREAT SURGEON. FROM THE

WEB SITES I WILL GIVE YOU YOU WILL LEARN MORE ABOUT THE DISEASE AND WHAT CAN

BE DONE FOR YOUR DAUGHTER. YOU DO NEED TO TALK WITH DOCTOR SUTHERLAND ABOUT

KASEY ESPECIALLY SINCE SHE IS SO YOUNG. IF YOU NEED I CAN ASK THE OTHER

MOTHERS OF THE CHILDREN WHO HAVE HAD THE SURGERY TO TALK WITH YOU. HERE ARE

THE WEB SITES, E-MAIL ADDRESSES, AND PHONE NUMBERS FOR MN. SHIRLEY

Dr. Sutherland's E-mail address dsuther@....

Dr, Sutherland's secretary's E-mail address papas001@...

Dr. Sutherland's telephone number (612)625-7600

Dr, Sutherland's web site http://www.Diabetesinstitute.org/

Dr. Sutherland's web site

http://www.insulinfree.org/isletcenters/fairview.htm

Sue Rebello's Story http://www.insulin-free.org/stories/rebello.htm

[Guest guest]

In a message dated 9/3/02 3:46:01 PM Eastern Daylight Time,

angelag@... writes:

>

>

> Hi Everyone,

>

> My name is , and thanks to my best friend, I just found

> this group today. I can't believe it!

>

> My Daughter, Kasey, is eleven years old and has been in and out

> of " attacks " since she was five. I do not know everything about the

> disease, but I do know quite a bit.

DEAR ANGELA, I AM VERY SORRY ABOUT KASEY. I WANT TO GIVE YOU THE NAME OF THE

DOCTOR WHO CURED ME. HE IS A SURGEON IN MN. I WILL GIVE YOU HIS E-MAIL

ADDRESS SO YOU CAN DISCUSS KASEY'S PROBLEM WITH HIM. HE IS VERY NICE AND

WILL BE HAPPY TO ANSWER ANY OF YOUR QUESTIONS. TWO OTHER CHILDREN FROM OUR

SUPPORT GROUP HAVE BEEN TO MN AND NOW ARE FREE OF PANCREAS ATTACKS. HE IS

THE ONLY DOCTOR I WOULD TRUST TO HELP WITH KASEY'S PROBLEM. HIS NAME IS DR.

SUTHERLAND. HE WORKS AT THE FAIRVIEW UNIVERSITY MEDICAL CENTER IN

MINNEAPOLIS MINNESOTA. HE IS A WONDERFUL MAN AND A GREAT SURGEON. FROM THE

WEB SITES I WILL GIVE YOU YOU WILL LEARN MORE ABOUT THE DISEASE AND WHAT CAN

BE DONE FOR YOUR DAUGHTER. YOU DO NEED TO TALK WITH DOCTOR SUTHERLAND ABOUT

KASEY ESPECIALLY SINCE SHE IS SO YOUNG. IF YOU NEED I CAN ASK THE OTHER

MOTHERS OF THE CHILDREN WHO HAVE HAD THE SURGERY TO TALK WITH YOU. HERE ARE

THE WEB SITES, E-MAIL ADDRESSES, AND PHONE NUMBERS FOR MN. SHIRLEY

Dr. Sutherland's E-mail address dsuther@....

Dr, Sutherland's secretary's E-mail address papas001@...

Dr. Sutherland's telephone number (612)625-7600

Dr, Sutherland's web site http://www.Diabetesinstitute.org/

Dr. Sutherland's web site

http://www.insulinfree.org/isletcenters/fairview.htm

Sue Rebello's Story http://www.insulin-free.org/stories/rebello.htm

[Guest guest]

In a message dated 9/3/02 3:46:01 PM Eastern Daylight Time,

angelag@... writes:

>

>

> Hi Everyone,

>

> My name is , and thanks to my best friend, I just found

> this group today. I can't believe it!

>

> My Daughter, Kasey, is eleven years old and has been in and out

> of " attacks " since she was five. I do not know everything about the

> disease, but I do know quite a bit.

DEAR ANGELA, I AM VERY SORRY ABOUT KASEY. I WANT TO GIVE YOU THE NAME OF THE

DOCTOR WHO CURED ME. HE IS A SURGEON IN MN. I WILL GIVE YOU HIS E-MAIL

ADDRESS SO YOU CAN DISCUSS KASEY'S PROBLEM WITH HIM. HE IS VERY NICE AND

WILL BE HAPPY TO ANSWER ANY OF YOUR QUESTIONS. TWO OTHER CHILDREN FROM OUR

SUPPORT GROUP HAVE BEEN TO MN AND NOW ARE FREE OF PANCREAS ATTACKS. HE IS

THE ONLY DOCTOR I WOULD TRUST TO HELP WITH KASEY'S PROBLEM. HIS NAME IS DR.

SUTHERLAND. HE WORKS AT THE FAIRVIEW UNIVERSITY MEDICAL CENTER IN

MINNEAPOLIS MINNESOTA. HE IS A WONDERFUL MAN AND A GREAT SURGEON. FROM THE

WEB SITES I WILL GIVE YOU YOU WILL LEARN MORE ABOUT THE DISEASE AND WHAT CAN

BE DONE FOR YOUR DAUGHTER. YOU DO NEED TO TALK WITH DOCTOR SUTHERLAND ABOUT

KASEY ESPECIALLY SINCE SHE IS SO YOUNG. IF YOU NEED I CAN ASK THE OTHER

MOTHERS OF THE CHILDREN WHO HAVE HAD THE SURGERY TO TALK WITH YOU. HERE ARE

THE WEB SITES, E-MAIL ADDRESSES, AND PHONE NUMBERS FOR MN. SHIRLEY

Dr. Sutherland's E-mail address dsuther@....

Dr, Sutherland's secretary's E-mail address papas001@...

Dr. Sutherland's telephone number (612)625-7600

Dr, Sutherland's web site http://www.Diabetesinstitute.org/

Dr. Sutherland's web site

http://www.insulinfree.org/isletcenters/fairview.htm

Sue Rebello's Story http://www.insulin-free.org/stories/rebello.htm