Pancreatic divisum is a congentital problem, so there is no real treatment. The docs can try cutting the opening of the smaller duct (the minor papilla) to open it up, or others will insert a stent duing ERCP (into the duct to prevent blockage) but that's really just about all that can be done to 'correct.' but other than that there's unfortunately little treatment that has been well characterized.
If the pain is due not to the pancreas but to SOD, sphincter of Oddi dysfunction then her taking narcotic pain meds is not going to help. Narcotic-based meds result in higher ductal pressures and can actually cause pain. Did they do manometry of the common bile duct to establish that the pressures were at a normal level? Does your daughter have her gallbladder?
CalGal, I don't think manometry of the common bile duct was done. And yes, she has her gallbladder. The MD at Shands did not recommend an ERCP procedure to correct the divisum because there were no assurances that the benefits would be greater than the risk of the surgery. Last night a "fellow" from Shands called to explain the CT finding that there was no pancreas body or tail. He said that he could visualize something that could be the body, but there definately was no tail and that the pancreas was significantly atrophied. He also said that Rebecca's tryptsin level was 5 vs normal of 20, indicating chronic pancreatitis. Interesting that the narc pain meds causes pain. Nothing else puts a dent into it tho. But that could be why higher levels have been needed.
David, make sure her gallbladder is checked out. When pancreatic issues start, in some cases they can be tied in with GB issues.
Also make sure they test her for the presence of autoimmune pancreatitis. It's often overlooked.
The immunology side is definitely a possibility. Six months ago she had low IGG values (530). Lately it is back to the 750 range, but only 6 of 14 pneumonia titres were adequate. Her immunologist will retest in 2 months. Diabetes itself is an autoimmune disease. She has had her gall bladder checked a couple times, with no findings. I think it was a hida (sp) scan??? By the way, should I ask in this forum if you are a medical professional or a professional from hard knocks who has been there in a similar situation as my daughter.
David, I am not a medical doc. My background includes teaching them, pounding all the facts they don't want to learn into their heads, and clinical research. So I'm fairly familiar with much of the GI system.
CalGal, we just got back from Shands a couple days ago. The MD (head of the hepatology dept, being the closest thing to an immunologist they had) ruled out autoimmine pancreatitis based on IGG4? blood work. Since a liver biopsy 18 months ago showed small duct PSC, he suggested another biopsy to check for changes, but he doubts that it's anything more than fatty liver. We're seeing their top pancreas MD, Dr. Phil Toskas because her trypsin level (8 vs low normal 29) was one of the lowest they've ever seen for someone who still has a pancreas (or at least part of a pancreas). All this is well and good, but there doesn't seem to be anything on the horizon to lower her pain levels.
Thanks for setting me straight on the post I sent to Dr. Pho. I did not realize I had to get on the expert side and contact him. Have you ever heard of a slightly bulky pancreas and what it means. My doctor told me it was not anything to worry about since I have no symptoms of pancreatic problems and all my blood tests came back normal. He thinks my gallbladder or gerd is causing all the pressure I am feeling in my upper stomach. I wish he would find out soon because some days the pressure is so bad I feel as if my stomach is going to explode.