Re: chronic pancreatitis

[Guest guest]

Anyone ? I am really looking for any info that will help do what is

long overdue as far as testing while we are waiting to find the right

doctor for Braden.

thanks

Lori

lucky mom blessed with wonderfully wild 10 year old triplets

including Braden w/ short bowel syndrome, common variable immune

deficiency, PSC, Familial Polyposis...the list goes on...

>

> Have any of you been diagnosed with chronic pancreatitis ? This has

> been suggested as an explanation for several things going on with my

> son but since we are " between doctors " currently no further testing

> has been done. He has confirmed pancreatic insufficiency (stool

> pancreatic elastase testing) has had problems with his glucose levels,

> stool testing showed fat malabsorption and he has had quite a few

> acute pancreatitis episodes that can lead to chronic pancreatits. I

> posted how he was doing on a site for liver kids and thanks to

> prompting me to think about this again I remembered that his last

> hepatologist asked that his tysinogen levels be tested- but that

> hasn't happened yet.

>

> If you do have this how has it been treated ? With digestive enzymes

> only ? Or is there more to the treatments ??

>

> Lori

> lucky mom blessed with wonderfully wild 10 year old triplets

>

[Guest guest]

Dear Lori;

Has Braden been tested for elevated IgG4? This seems to be diagnostic

of autoimmune pancreatitis, which is often very difficult to

distinguish from PSC. I can point you to references on this if you

are interested in more information. Apparently autoimmune

pancreatitis responds well to corticosteroids.

The other possible link between PSC and pancreatitis is the cystic

fibrosis gene, CFTR. Mutations in this gene can cause susceptibility

to pancreatitis, and have been linked to PSC in some studies. Other

genes that can influence chronic pancreatitis are the pancreatic

secretory trypsin inhibitor gene (SPINK1) and the cationic

trypsinogen gene (PRSS1). Testing for the levels of trypsinogen might

therefore be worth pursuing. From what I have read, enteric-coated

pancreatic enzymes are the drugs of choice for treating steatorrhea,

while conventional non-enteric coated enzymes are preferred for

managing pain in chronic pancreatitis. Again, I can point you to

references on this if you are interested.

Best regards,

Dave

(father of (22); PSC 07/03; UC 08/03)