Re: triglicerides and pain

[Guest guest]

There are several member who have pancreatitis as a result of elevated

tirglicerides, though you may not here from them tonight I know you will. how

old

is your daughter? My daughter Cassie just turned 13 this month, she had her

1st attack in Nov 2000 and got the diagnosisof idiopathic chronic recurrent

pancreatitis or (ICP) in Oct 2001. Since then we have been on a constant

rollercoaster ride with her. Many many Dr's visits with intense pain yet no

elevation

of Her enzymes. Other times she has no elevation, but when I take her back

the next day levels are threw the roof. That is the nature of this beast it is

very unpredictable. Cassie does not have a trigliceride problem yet she

does have high cholesterol, always has. Even now after 2 1/2 years on low fat

diet.

I have found that both Cassie peditrician and her GI are very conservitive in

her treatment. Kids are even rarer than adults. I was even told that

because CP is so rare in kids there is no such thing as a Pedeatric GI who's

specialty is Pancreatits in this country. Just alot of guys who each know a

little

bit. She scares them, they don't know what to do for her, their biggest fear

being drug addiction. That's why she can have intense pain and they can send

us on our way.

Pancreatitis can run in families. Does/did anyone else within your husbands

family have problems. Both Cassie and I posess a genetic mutation that

predisposes some to CP. There is a mother and son from Texas that also both

suffer

from CP, he's 11 I think and I'm not sure how long this has been a issue for

them. I am so sorry for your loss and understand your fear you have for your

child. the 2 best words of advice I can give you is stick to your guns if you

know there is something wrong with her don't give up just because her levels

are ok. And remind them over and over again of how your husband, her father

passed. There are many other conditions besides pancreatiits that can cause

life threatening conditions and pain. Pain is a sign of a problems,

Since Cassie got sick our lives have changed quite a bit. We ltake one day

at a time and each day she is pain free or has pain that is tollerable both my

husband and I thank god for. We understand your fears, hurt and constant

worry you have for your daughter. Please e-mail me dirrectly if you need to

talk,

God bless you and you daughter.

Patty Hurst

Bangor, ME

Maine State Rep

PAI