Childhood pancreatitis

[Guest guest]

In a message dated 10/7/00 8:46:58 PM Eastern Daylight Time,

tross67260@... writes:

<< It is heartbreaking to see him go through it. >>

Pat Ross, T Ross, and little Ross

It sounds like you all have a lot going on in your lives right now and so

much is causing you all problems.

No advice from this end but only a suggestion, settle down and let nature run

it's course.

History is there and you can't change it, smoking, drinking, birth,

epileptic, insurance, hospital, etc. that is all behind you at this point.

The issue is health and current and future condition.

While it sounds like an old saw, and it is, if it hurts when you do that,

then don't do that. PERIOD.

Ease up, find a good doctor that you can believe, and keep a close eye on

everything, and slow down for a while. I do see a lot of stress in your

message.

Best wishes,

Poncho9191

[Guest guest]

Thanks for the advice. You are right. Sometimes things just get a little

overwhelming and frightening. The thing that bothers me most is that we are

having such a hard time finding a doctor that specializes in childhood

pancreatitis. It is very frustrating.

[Guest guest]

In a message dated 10/07/2000 8:46:58 PM Eastern Daylight Time,

tross67260@... writes:

<< >One (maybe more, I'm not sure) blood test revealed that his

tryglicerides

>were a little high, but his endocrinologist said they have to be

through the

>roof before that would cause it and his weren't that high. >>

Hi !

I am sorry to hear that your son has this problem! I just wanted to write

you and tell you that my pancreatitis is caused by high triglycerides. My

levels were at 4000 last year and I went into a coma as a result and was out

for 8 weeks or so. At the time that i was released from the hospital, my

tri's were around 300 and since that time, they have went back up and are now

at 3000. I am on 3 different meds to help control them currently but none

seem to help and it has been diagnosed as a hereditary problem. What a

nightmare this disease is! It is hard enough dealing with it at 35, I

couldn't imagine being a child and going through it all. Bless his heart.

If I can answer any questions please feel free to ask. I am not nearly as

educated in this illness as many here are, but I pretty much have the

triglyceride issue down pat!!!! LOL I am sure you will get much support

here and comfort in knowing that you are not alone. There are caregivers

here as well as patients....so we definately hear both sides and that helps!!!

Best wishes and hugs,

[Guest guest]

Thanks for the info and understanding words. I will dig in to this

triglycerides issue a little more. Did you doctor put you on a low fat, high

carb diet?

[Guest guest]

In a message dated 10/7/00 11:13:28 PM Eastern Daylight Time,

tross67260@... writes:

<<

Thanks for the advice. You are right. Sometimes things just get a little

overwhelming and frightening. The thing that bothers me most is that we are

having such a hard time finding a doctor that specializes in childhood

pancreatitis. It is very frustrating. >>

Dear Pat, find a large well known good children's hospital. There is one in

Cincinnati where I live. I think he needs to go to a hospital famous for

their teaching and experience. Start investigating for the best hospital.

There you will probably find the best doctors. Shirley

[Guest guest]

When I got pancreatitis at the age of 10 I went to Vanderbilt Medcial

hospital in nashville Tn. I stayed there for three months and the

staff was wondeful. If you have any question's please feel free to

email me....

> Can anyone recommend some where I can take my 13 year old for more

> testing and treatment of his pancreatitis. We are very limited

here

> in Oklahoma.

> Thanks!

[Guest guest]

In a message dated 10/08/2000 10:52:42 AM Eastern Daylight Time,

tross67260@... writes:

<< Did you doctor put you on a low fat, high

carb diet?

>>

Hi again! Yep, low fat but no one has mentioned low carbs to me yet. I just

also found out that I am diabetic and am scheduled for a diabetes wellness

class in a month so they will go over all of that with me then I suppose. It

is all pretty scary because I took care of my brother who was a severe

diabetic and I watched all that he went through.

Take care, and I will chat with ya later!!

Hugs,

[Guest guest]

,

Hi my name is and I am just wondering if you take the ememzies pills

or not? and if you do do you have to have shots for the diabetis? I am on a

low fat diet but that is when I am able to eat when the pain is too bad I

don't feel like eatting much but none of the doctors said anything to me

about the high carb part either..

your pancreatis buddy

[Guest guest]

I'm not sure what ememzies pills are, but he is on no other medication

besides his insulin. Up until about 1 month ago, he took about 7 to 8 shots

of insulin per day. We recently got him on an insulin pump which decreases

that to 1 shot every three days. He still has to do his blood sugar checks

(4 to 5) a day which involves poking his finger with a lancet.

Do you think the low fat diet helps? Were your tryglycerides high?

I am very scared about hearing that this disease can be a constant pain. Did

yours start out being constant pain or did it develop that way over time?

[Guest guest]

Are you Type 1 or Type 2 diabetic?

Good luck with your class.

[Guest guest]

Thanks! I will check it out. I have been sending lots of e-mails to

digestive disease centers across the U.S. I want to take him to the best

place for help. It is always good to hear an opinion based on a child's

eyes. Thanks so much!

[Guest guest]

I take viakose to help the pancreas I think that the low fat helps cuz the

pancreas has a hard time digesting fats so it does help my tryglycerides

haven't been high a little elevated but not high I thought I had the flu when

this first started and then the pain hit and I knew it was something else and

I have had the pain since May except the 8 weeks I had the stent in but they

took that out and the pain came back.. I wish you luck I know it is scary I

am scared alot cuz there are so many unanswered questions and that is the

worst part... take care and I wish him a pain free week

[Guest guest]

In a message dated 10/9/00 4:52:22 PM Eastern Daylight Time,

tross67260@... writes:

<<

We are considering taking my 13 year old son to the Pancreatic

Disease Center at the University of Cincinnati. The doctors there

seem interested in seeing him. Or, we may go to the Mayo Clinic in

Minnesota.

Can anyone give some direction or advice on which of these clinics

has the most expertiese? Or can you suggest any place that you know

would be good. We want him to have the best of the best.

Thanks!

>>

Dear , I live in Cincinnati, and I have had the doctor your son

probably would have. I can't recommend him. If you know his name let me

know and I will tell you if he is the same one I had. Have you heard of Dr.

Cotton in SC? I also hear a lot about Shands hospital from Jim S. Maybe he

can help you. I always went to Dr. Lehman in Indianapolis for stents. The

doctor in Cincinnati who I went to and didn't care for is Dr. S. .

There are some people in this group who go to SC also. I think Diane goes

there. Good luck. My heart goes out to you. Shirley

[Guest guest]

I e-mailed Dr. Cotton and his response was:

" I am sorry you and your son are having so much trouble. ly it is

difficult to make any specific comment. Pancreatitis is rather unusual in

childhood, so that complex cases tend to be managed (or at least advised) by

adult gastroenterologists with specific expertise in pancreatic and biliary

disease. It sounds as if your advisors have tried hard to exclude gallstones

and drainage problems by scans and ERCP. There are genetic defects which can

be detected by appropriate blood tests. I am sure your

pediatrician/gastroenterologist are familiar with these. I wish I could do

more to help. "

I will get with Jim S. & Diane to see if they think I should push to get him

in there.

The doctor in Cincinnati is Lehel Somogyi, MD, PHD, Assistant professor of

Medicine, Director of Endoscopic Ultrasonography Pancreatic Disease Center

and Division of Digestirve Diseases at the University of Cincinnati College

of Medicine. However, I am sure they are all affiliated with one another,

don't you think? May I ask why were you not impressed with Dr. ? Lack

of knowledge/experience, bedside manner?

Thanks for your input and your kind words. I can't believe this is

happening to my baby! He has already been through so much being diabetic for

4 years. The injections, the blood sugar testing.......

Thanks again,

[Guest guest]

In a message dated 10/9/00 8:07:54 PM Eastern Daylight Time,

tross67260@... writes:

<<

The doctor in Cincinnati is Lehel Somogyi, MD, PHD, Assistant professor of

Medicine, Director of Endoscopic Ultrasonography Pancreatic Disease Center

and Division of Digestirve Diseases at the University of Cincinnati College

of Medicine. However, I am sure they are all affiliated with one another,

don't you think? May I ask why were you not impressed with Dr. ?

Lack

of knowledge/experience, bedside manner?

Thanks for your input and your kind words. I can't believe this is

happening to my baby! He has already been through so much being diabetic

for

4 years. The injections, the blood sugar testing.......

Thanks again,

>>

Dear . my heart goes out to you. I have one child a daughter and she

has been sick a lot in her life. In fact she is sick right now and has been

sick for five years. So I know a mothers pain. I only wish I could really

give you the best advice. You seem to be doing the best thing but e-mailing

different medical institutions. Ask Jim S about Shands hospital. I will ask

another friend of mine who know a Dr. Toskes.

You did say that your son is a diabetic didn't you? I know two children who

went to MN to Dr. Sutherland to have their pancreas removed and the islet

cells transplanted into their liver. They are doing great. I will give you

his e-mail address so you can write him. If your son is a diabetic call him

anyway. Ask his sec. to have him call you back. He is very nice and maybe

if he can't help you he might suggest someone. Tell him about your son and

how he is suffering. It is worth a try.

Ph# 1-(612)625-7600

E-mail address papas001@...

If the sec. tells you that he doesn't operate on diabetics ask her to have

him call you anyway. Maybe you can get a name or hospital from him.

I don't know the doctor you referred to here in Cincinnati. I had Dr.

and I found him to be too eager to operate. I also was very sick at the time

with two blood infections and a bowel infection and he would never return my

calls. He acted as though he knew it all but I felt he didn't know much or

had much experience. Hang in there and keep looking and asking. I do know

that hospitals are working on injecting the pancreas with cadaver islet cells

for diabetics and I believe someday this will help chronic panc. sufferers.

I will pray for you and your little son. God Bless Him. If you want to ask

questions that is fine. If you just want to cry or vent that is fine also.

There are people here that know far more than I. Take care of your little

boy. Shirley

[Guest guest]

Thanks, Shirley.

I will contact him. Thank you so much!

People don't realize how stressful and painful it is to have a sick child.

I will keep you and your family in my prayers

[Guest guest]

Thanks, Shirley.

I will contact him. Thank you so much!

People don't realize how stressful and painful it is to have a sick child.

I will keep you and your family in my prayers

[Guest guest]

In a message dated 10/09/2000 9:29:27 AM Eastern Daylight Time,

mrsteep1@... writes:

<< Hi my name is and I am just wondering if you take the ememzies

pills

or not? and if you do do you have to have shots for the diabetis? I am on a

low fat diet but that is when I am able to eat when the pain is too bad I

don't feel like eatting much but none of the doctors said anything to me

about the high carb part either..

your pancreatis buddy >>

Hi !

No, I am not on enzymes but I do take like three meds for triglycerides. All

together I am on like 16 pills a day. I hate them all!!!!! I am not

currently an insulin dependent diabetic, but I am sure it is just around the

corner for me. I am taking and oral med called Metformin for the diabetes

right now and I am due to have some blood work done at the end of this month

to see how it is doing for me. I am scheduled for a diabetes wellness for

life class in November and I think that will help alot. They will give me

diet info and show me how to monitor my blood etc..... My brother, the one

that I lost while I was still in a coma last year, was a diabetic on insulin

as well as an amputee and on periteneal dialysis, so since I had taken care

of him for 6 years or so, I am pretty aware of all of the dont's but I can

always use a refresher course on all of the do's!! LOL I know all of the

things I shouldn't eat, but am not real up on the things that I should eat

and I think this class will be real informative for me. Are you diabetic?

btw, I don't know if you knew or not, but I had surgery yesterday on my neck

to repair the nasty hole in my throat left by the trach I had while in the

hosp last year. They had to move a muscle around to the front of my throat

coz it pulled away from the site and that is what left the ugly hole there.

I also had dermabrasion done for all of the left over scarring from it too.

I am a pretty sore puppy today, but all in all it went pretty well. Just

looks like I have a serious road burn on my neck!! LOL Pretty bloody and

all, but I think once it heals it will look great!!

Have a good day and write when you can.

Hugs,

[Guest guest]

In a message dated 10/09/2000 9:57:45 AM Eastern Daylight Time,

tross67260@... writes:

<< Are you Type 1 or Type 2 diabetic?

Good luck with your class.

>>

Not really sure which one I am?????Guess that just proves that I REALLY need

the class, huh? LOL Which ever one is not insulin dependent is the one I am

right now. I don't have very high hopes of staying off of insulin though, I

think that with all on my pancreas problems, my thyroid problems and the fact

that insulin dependent diabetes runs in my family pretty much puts me at a

high risk. Oh well, yet another obstacle for me to overcome!!! " this

too shall pass " !!!!

How are you holding up today? Hope all is calm for you!

Hugs,

[Guest guest]

I am the mother of an 11-year-old boy , named , who has been

suffering from pancreatitis for six years. The doctors have no idea what

is causing it. I understand your frustration with trying to find

pediatric specialists who are familiar with pancreatitis. We live in

Massachusetts, so we go to Boston Children's Hospital (a 2 1/2 hour drive

from our home). Fortunately, there are many adult specialists in the

Boston area. We have an adult specialist from Brigham & Women's

Hospital, which is right next door to Children's, who participates, with

our pediatric gastroenterologist, in all of 's procedures.

, unfortunately, has spent 100's of days, each year, in the hospital

with this disease. He has had uncontrollable pain for which he has

recieved both temporary and permanent nerve blocks for. He has spent

months on TPN (which is IV nutrition) because when he is suffering from

an attack, it seems to take months for his system to begin to tolerate

anything in his stomach at all.

The amazing thing is that when he is well, you would never know there was

anything wrong with him. People always say that he looks so healthy. He

goes to school and is still in the same grade as his classmates. He has

tutoring when he is too sick for school, but well enough to participate.

Sometimes, he is well for as long as a couple of months. Other times, he

gets sick within a few weeks.

If you have any questions, please feel free to e-mail me. Good-luck!

Suzanne

On Mon, 9 Oct 2000 22:32:17 EDT tross67260@... writes:

> Thanks, Shirley.

>

> I will contact him. Thank you so much!

>

> People don't realize how stressful and painful it is to have a sick

> child.

> I will keep you and your family in my prayers

>

>

>

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[Guest guest]

Hi, Suzanne. I'm so glad you got in touch with me.

I am so sorry about your son. This is really scarring me. I had no idea

there was even such a disease out there until now. We have been dealing with

the diabetes for 4 years now and that was nothing compared to this! I have

been through it three times now. I can't imagine what it would be like to go

through it as long as you have.

Is your son a diabetic? Did this come on a little at a time and gradually

get worse? Do you work and how do you deal with that with him being in the

hospital so much? Have you had a 2nd opinion? Are you impressed with his

doctors?

I am really frightened.

[Guest guest]

,

It sounds as if you are Type II, adult onset. My son is Type 1, Juvenile

insulin dependent. The diabetes is a complicated disease in itself, but they

now have wonderful things to help keep your sugars in control.....blood sugar

monitors, fast acting insulin (if you ever go on insulin & I hope you don't

have to). My son counts carbs and seems to do well with it. We just

recently put him on an insulin pump and it is WONDERFUL.

However, I am concerned about the difficulty of controlling his diabetes if

this horrible disease (the pancreatitis) progresses any further.

If you have any questions or anything, please don't hesitate to ask.

Good luck!

[Guest guest]

In a message dated 10/12/00 1:05:14 AM Eastern Daylight Time, wools5@...

writes:

<<

is not diabetic. And yes, it did come on gradually and become

worse. When he first started having attacks, they would only last for

about a week or two. His pain was always controlled with narcotics.

Then about three years ago, his episodes would last longer and the pain

became more uncontrollable. He always gets a Demerol pain pump because

of allergies and intolerances to other drugs, (we've tried them all).

But, sometimes the pain is so bad that they can't control it even with

mega-doses of Demerol. He almost had convulsions once from too much. So

then the doctors would put in an epidural that stayed in for 7 to 10

days. Last year, he was in pain for so long, that the doctors tried two

different types of nerve blocks to control the pain. The first one was a

new procedure and the doctor that invented it, performed it on .

Unfortunately, they had never done this on a child before and they had to

guess how much medication they would need. It didn't work. So, they

decided to do a permanent block, where they inject alcohol into the

nerves to kill them. He has since had another attack with severe pain,

but we were able to control it with the pump. This episode lasted about

6 weeks.

I was lucky to be working in the school where was attending. They

were wonderful about all the time I missed, (sometimes months at a time).

But, 15 months ago, we had a new baby, and I have not returned to work.

The baby has grown-up in the hospital with his brother, because I always

stay with and since I was nursing, the baby needed to be with me.

Last October/November, we spent seven straight weeks in the hospital.

This was followed by hospitalizations in Jan., Feb., and Mar. I try to

have him home as much as possible, and they let him come home on the

pump. I do all the care myself. He has a port in his chest that has two

lumens so we can give him nutrition and medications without worrying

about compatibility.

We are thrilled with 's doctors. We have our pediatric GI, our

parenteral nutrition doctor, our pain doctor, and our surgeon, who all

work together. Our GI doctor is constantly searching for new

information. He has consulted with researchers and has even presented

's case to a symposium of all the Boston-area GI specialists. Of

course, they had nothing new to offer.

I am sorry that this is so long. I hope I haven't scared you. Everyone

reacts differently to this disease.

Suzanne

>>

HI Suzanne, I just read that your son is not diabetic. I must tell you about

Dr. Sutherland in MN. He is a wonderful doctor a surgeon. He has been

removing the pancreas and transplanting the islet cells into the portal vein

in the liver with great success. could be restored to a healthy life.

I am scheduled to have the surgery Dec. 8. I know other children have had

this surgery and are doing just great. I will send you the website so you

can read it and maybe call Dr. Sutherland and talk with him about . Dr.

Sutherland is very nice and would be happy to talk with you over the phone.

http://www.insulin-free.org/stories/rebello.htm

Dr. Sutherland telephone # is (612)625-7600 If you have any questions please

feel free to ask. Shirley

[Guest guest]

In a message dated 10/13/00 12:47:58 AM Eastern Daylight Time,

wools5@... writes:

<<

Shirley

Thank you very much for this information. I did go to the website and

was very impressed. But, I was wondering if they would perform this

surgery if your pancreas wasn't terribly damaged already. has many

calcifications and evidence of damage from all his episodes, but his

pancreas still functions well. Had anyone suggested that you have your

pancreas removed?

Suzanne

>>

Hi Suzanne, no one suggested me having my pancreas removed. I saw the path I

was heading in and I have had enough. I can see my body getting sicker and

worse everyday and I know of others who have had this surgery and they are

doing just great. Dr. Sutherland just operated on a little 10 year old girl

and she is doing so well. It seems to me if is not a diabetic he has a

good chance of being a candidate. Only don't wait until he is a diabetic

because then they won't take him. I am so scared every day that I will have

an attack and no longer be a candidate. My surgery date is Dec 8.

Did you click on the other information at the top of the page of Sue's story?

If you would like you can call Sue or e-mail her. She has been thru it and

probably could help you so much.

I know a boy who lives near me who had almost all his pancreas removed at

Childrens Hospital here in Cincinnati and the doctors shipped his pancreas to

MN they then removed the islet cells and sent them back to Childrens Hospital

where they were injected into the boys liver. His parents have one regret

that they didn't have the whole panc. removed since they fear someday he

might get cancer in the remaining part.

Suzanne, I do hope you look into it. I think that little could really

benefit and live a normal life without pain. If you do decide to look into

it don't have it done at any other hospital. Only Mn. they have been doing

it since the 70's and have it down. Many other hospitals say they are doing

it but they are just starting to do it and it has not gone well for them. So

please if you consider it for only go to MN and have Dr. Sutherland. If

you want to talk with Sue I know she will be happy to talk with you. I talk

with Sue, Mike and Kathy, and Gail quite often. Sue had the surgery, Mike,

and Gail, Whitney. All are doing great and Whitney is the 10 year old girl.

I am sure that Sue will give you Whitney's home number or e-mail address and

you could talk with her mother. What ever you decide good luck to you and

little . I will pray for him and his family. Shirley

[Guest guest]

In a message dated 10/13/00 1:30:00 AM Eastern Daylight Time, melfire@...

writes:

<<

Suzanne,

I am also having the islet cell transplant in Minnesota in Jan. I

had to take a 3 day diet and then 3 days of testing to see if I had

functioning islet cells, I too have a lot of damage and scar tissue

on my pancreas from prior attacks. I passed the test at 100% which

means my islet cells are not damaged at all yet. When they become

damaged is usually when signs of diabetes shows up. Sorry for

butting in but I thought I would give you my experience with this.

>>

Thanks , are you feeling any better? Are you excited yet about

moving? I received two more packets from the doctors today. Just two more

to go and they are taking forever. My arm is still very bad and shows no

signs of improving. I spend all day putting hot compresses on it. I now

have a bad sinus infection also. I can handle that. It's no big thing

compared to panc. How are you doing without your meds? Shirley