Re: /Cassie ?

[Guest guest]

Good morning ,

Thanks for your questions about Cassie, she just turned 13 last month and yes

she has CP. The breif story is She has had problems all her life but her

1st attack requiring hospitalization was in Nov 2000. They thought she had and

appendicidis. Her current diagnosis is Idiopathic Chronic reccurent

pancreatitis. As well as ADHD and a non-verbal learning disorder.

We have had many ups and downs with her thru the years, though more downs

since nov 2000. In 2001 she was hospitalized 3 times within 6 weeks, they say

she had 3 accute attacks at that time. I say It was 1 large one and they kept

discharging her to early. Because of this she finally got her GI referral and

had an ERCP in Jan 2002. They found her common bile duct was large for her

age but the opening was quite small so they enlarged it. this threw her into

another attack and another week long hospitalization. Dr's though this was

reason for her problem, that she was having gallstones and could not pass them.

Well they were wrong 3 weeks later another attack. Several small attacks

followed in which we took care of her at home. Clear liquids, no food and rest.

Then she had another doozy in Sept 2002 that put her in hospital. At that time

Her GI came up and preformed an upper endoscopy and he biopsied several

different areas of her upper digestive track. Everything was a OK. So he

referred

us to Dr Fox at Boston Childrens Hospital.

In Nov 2002 we saw him. Told us stop enzymes, not helping, stop diet

restrictions not helping, stop antioxidents, not helping. Then he ordered

testing

for hereditary pancreatitis. Well we stopped enzymes only, everything else he

told us to stop we are still doing. I know that diet control does not prevent

her from having attacks but it is helping with the frequency. As for the

antioxidents well they can help for lots of other things too. She was put back

on

enzymes the 1st of May at our request as she now has pain whenever she eats

anything.

When they tested for hereditary pancreatitis they also tested for SPINK1

(serine proteasse inhibitor Kazal1). All of us where tested. My son and

husband

were negetive on both. Cassie and I both carry SPINK1. Depending on the

study, where its done and who's doing it depends on what % of those with

ideopathic pancreatitis carry this mutation. I've read studies with as few as

11%

and one as high as 43% in Germany. It does not casue pancreatitis but seems

to predisose carriers to pancreatits, pancreatic cancer, ovarian and colon

cancers, and Diabeties type 2. So by having SPINK1 makes her dx hereditary

Ideopathic Chronic recurrent pancreatitis. Many Dr's would debate this dx but

most

Dr's dont even know what SPINK1 is and look at me cross eyed when it is

brought up.

Since then her local Drs seem to have abandond her. Any questions we have

had I have had to look up on the web, very little out there on it in layman's

terms. Our biggest problem has been with pain meds, that is getting them for

her. The seem to think that if she's not throwing up she can't be in any pain.

And if her levels aren't elevated she's faking. It's very frustrating.

Unless she is in the hospital Cassie tries to go to school everyday. Alot of

mornings you can see her wincing in pain. which she denies she has and goes.

Some

times its just and hour other times she makes it 3 or 4 untill she asks to

come home. Then we may go weeks on end with no phone calls at all. My husband

and I call her our hero.

She finds at times CP very hard to deal with socially. She's afraid of being

somewhere (like camp or a friends house) and being fed something she

shouldn't eat. No matter how many times we tell people that " FAT " has to be

controled in her diet they just don't seem to get it. The other thing that she

faces

is kids threatening to punch her in the stomach. They think its funny to

terrorize her.

Thanks for asking about her god bless. I hope today finds you pain free.

Patty Hurst

Bangor, ME

Maine State Rep

PAI