Re: Helped needed right away for sick Child.

[Guest guest]

Hi Louie,

I am so sorry about your daughter and everything that you and

she has been going through. I think it is good that you are

getting a GI consult. As far as recommending tests: from my

personal experience the only tests that revealed what was wrong

with me was, first, a MRCP with CCK (makes the biliary tract

show up better), or if available a MRCP with Secretin challenge

will be more specific to the pancreas; and then, secondly, the

ERCP with endoscopic ultrasound. The first one (MRCP with

CCK) gave my new GI doc a clue that I have a birth defect with my

pancreas, the second one (ERCP with EUS) confirmed the birth

defect and also revealed a blocked minor pancreatic duct. Once

these conditions were found, he was able to initiate therapy

(stenting).

Prior to this, I had numerous CTs, ultrasounds, fluoroscopies,

an ERC (only looked at the biliary ducts, not the pancreatic ducts)

and MRIs. Not one of these showed my problem that was

obvious on the ERCP EUS.

If you are at wits end, and have a strong suspicion that you are

dealing with a possible pancreatic or biliary problem, I would

insist on the MRCP-CCK (or secretin) and / or the ERCP with

endoscopic ultrasound. I also recommend that you find a GI

doctor that specializes in pancreatic / biliary problems as the

tests that I mentioned are commonly done in a teaching or

tertiary care hospital.

It took me three years to find out what was going on with

me....multiple visits with my old GI doc...who seemed to not be

aware of the reported mal-formed pancreas....but only one 15

minute visit with the new GI doc who located the source of my

problem immediately. Hence, my strong advice that you get the

right GI doc!.

Good Luck and I hope both of you (and your husband) soon feel

better.

Laurie

[Guest guest]

Louie,

I'm so sorry your daughter is having problems. Have you thought about

having your daughter see a pancreas specialist? A trypsinogen (sp?)

might be a good idea too, that will tell if there is any pancreas

invovlement. From what I know, the test needs to be sent to a specific

lab to do this test, but I can't remember which hospital it is that does

this. Does anyone else on the board know which hospital it is which does

this test? I sincerely hope that your daughter doesn't have this disease

and I hope they find out what it is soon and that it is curable. You and

your family are in my prayers.

Kimber

--

Kimber

Vallejo, CA

hominid2@...

Note: All advice given is personal opinion, not equal to that of a licensed

physician or health care professional.