to Patty re: Cassie

[Guest guest]

Patty,

My 13 yr old daughter has the same problem with her levels being

normal. When she was first diagnosed when she was 10, she had

elevated enzymes when in an attack. But now she is in daily chronic

pain and they never elevate even if she has a flare up and the pain

is worse. We just can't seem to catch them elevated anymore. Her

docs always say if the enzymes are not elevated then she would have

to be diabetic if it was the pancreas, in which she is not diabetic

so they say it must be something else. They have done 2 ERCP's and

they showed damage, closed duct, small duct. So they know something

is wrong with her pancreas but they are always trying to blame

something else, lately her new pediatric GI is saying reflux. I feel

for you, it is hard to convince them. And like your daughter mine

has terrible veins so when they want to poke her with test after test

it is frustrating. I told them last week when her pain became severe

that I did not want blood taken and they actually agreed. But now

that her pain is still pretty bad, I am sure we are back to more

tests as soon as the doc calls me back today. I hope you get a doctor

that knows what is what, I found one and her new GI consults with him

so I may have some hope in this new GI learning something. I hope

Cassie feels better soon and you get some answers.

> KIMBER

> THANKS FOR THE INFO - I'VE GOTTEN MORE INFORMATION FROM YOU GUYS

THEN HER

> DOCTORS. TODAY I SPENT TIME TRYING TO EDUCATE HER PCP ONLY TO YET

AGAIN BE

> TOLD THAT CAN'T BE HAPPENING WITH CASSIE. THEY KEEP TRYING TO

BLAME IT ON

> CONSTAPATION. I'VE HAD SEVER CONSTIPATION AND THE PAIN IS NOWHERE

NEAR WHERE

> SHE DESCRIBES HERS. SO BASICALLY IT WAS SAME STUFF, DIFFERENT DAY.

HOPEFULLY

> I CAN HAVE MEANINGFUL DIOLOG WITH THE GI SHE SEES MONDAY IN BOSTON.

>

> PATTY IN MAINE

>

>

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