childhood chronic pancreatitis

[Guest guest]

My son, 11 years of age, was diagnosed in January with chronic

pancreatitis. He had a Frey procedure done to correct a complete

blockage in his pancreatic duct, which alleviated most of his pain. I

am looking for some help from other parents who have been through this

with a child. It is so rare, and I don't believe my doctors in

Rochester, NY have every dealt with this before. So little info is

available for childhood pancreatitis! Anyone???

[Guest guest]

Hi my name is , Alot of people on this site know me

extremely well. I am 17 yrs old and have suffered from pancreatitis since I

was 7. I understand all to well what your son is going through. I live in

NJ. My pancreatitis was Idiopathic. Theyre not sure why I had it. They Took

my Gall bladder, out accusing it of causing the pain. Then I still got

pancreatitis on a daily basis. I then had a partial pancreatectomy and that

made things worse they had removed the tail of my pancreas and found a

nodule and removed it. Then I found a Dr. in Minnesota who does a Full

Pancreatectomy Auto Islet cell transplant. He removed my whole pancreas

took my islet cells that are in my pancreas spun them in a machine and took

them and put them in the lining of my stomach my portal vein and my liver.

They then harvest on there on and you take insulin for about a half a year

and then the islets produce insulin on there own so I dont have diabetes

and now no pancreas. I had this surgery last year and after I had minor

problems they ended up taking my Appendix, Spleen, 85% of my lower bowel as

well. Ive been on narcautics so long that it hurts the bowel and eventually

destroyed my lower bowel but I have no bag!!! Thank god. I dont post often

but when it pertains to kids my age I know how it can be. I know a few

people on the east coast that are my age that had this same surgery. I know

some on the west coast too. But if you have anymore questions if you email

me personally and give me your number I would be happy to answer any of

your questions because I know what its like to be in your sons situation

and be confused and in alot of pain. And then have to explain that to Drs.

That just dont understand. I wish you the best and your son. Sincerly,

> [Original Message]

>

> To: <pancreatitis >

> Date: 5/27/2005 9:00:30 AM

> Subject: childhood chronic pancreatitis

>

> My son, 11 years of age, was diagnosed in January with chronic

> pancreatitis. He had a Frey procedure done to correct a complete

> blockage in his pancreatic duct, which alleviated most of his pain. I

> am looking for some help from other parents who have been through this

> with a child. It is so rare, and I don't believe my doctors in

> Rochester, NY have every dealt with this before. So little info is

> available for childhood pancreatitis! Anyone???

>

>

>

>

>

>

>

>

>

[Guest guest]

Hi Barbara, When you said January 2, that made me think. I bet you I can

tell you why your son had pain that day. Around every holiday I got sick

like it was clock work. We pointed it out that when your around holidays

you tend to binge and eat alot more junk then normal. And it makes the

pancreas work ten times harder and your pancreas cant produce enough

enzymes that you need for all the food. And it begins to flare. Another

thing is the days that he is in pain try the brat diet (I hate it myself

but it actually works) The brat diet is all your white carbs such as bread,

pasta, rice, pudding anything light it gives the pancreas a rest and try to

stay away from the meats until his stomach calms down. This might be a few

pointers until you find a right Dr. If you need any good Dr.s Names let me

know. I have my DR.s email and he tells me all the time if he thinks he can

help with a new patient to email him. And I can personally give you his

email and he will honestly give you answers hes a great man, He will answer

any and all questions right through email or even call you if you ask him

too. His name is Dr. Sutherland if your curious for his email let me know.

Anyway I can help would mean alot to me and tell your son I wish him the

best and to stay strong cause thats all you can do. Sincerly,

[Guest guest]

Hi Barbara, I dont know if they told you if he is 11 and 65lbs have they

checked him for Chromes Disease cause that goes hand in hand with

pancreatitis and I know a 5 yr old boy with Chromes and Pancreatitis. It

might be something to look into. Dr. Sutherlands email is

DSuther@... if you just email him he usually responds

within two hours unless hes in surgery. He is in Minnesota but I couldnt

recomend a better Dr. And im sure you just want to see your child healthy

and well again. So email him and tell him I sent you and he will give you

as much advise as possible and he is very straight forward with you. I know

alot of people that have gone to him and I havent heard any complaints yet.

He saved my life! Sincerly,