My daughter was diagnosed as having pacreatic divisum at age 9. She was complaining of major abdominal pain for several months and finally the proper labs were taken and an ultrasound was done which revealed a pacreatic psuedocyst. Prior to surgery she underwent an ERCP and the doctors thought that she had a choledocal cyst. It wasn't until they had her open on the operating room table that they discovered the divisum. A portion of her intestine was re-routed and attached to the psuedocyst to drain. She continued with severe pancreatitis and a month and a half later she uderwent another surgical procedure to open the pancreatic ducts to allow the fluid to flow. She had an amazing recovery and was eating and out of the hospital two weeks later. Now, one year later she is having another bout of pancreatitis and we are so scared. The doctor says that the bout is a mild one with her amylase and lypase only slightly elevated. The options if the pancreatitis continues or increases are another ERCP with possible stints - that is if there is someone in the country who would perform such a procedure on a child. The wierd thing is that she seems to be ok through out the day with her pain at a 2 on a 1-10 scale, but as soon as she lays down at night her pain shoots to a 7 and is almost unbearable. Is there anyone out there that can relate to the timing of the pain and who may have had any of these similar surgeries?
i hate to hear your daughter is going thru this. it is very painful and hard for an adult to cope sometimes. My first pancreatic attack they thought i had a divisum but that endeed up not being the case. In the last year ive had 2 stents placed in the pancreatic duct. The first one i had was put in 9-11-06 and the 2nd one was placed 5-1-07 The first one seemed to last longer i felt like i had my life back again. but the symptoms returned in april and i had the ercp in may. this last one didnt last but 3 months before symptoms returned full force. It does seem to hurt worse laying down flat. it helps my pain sometimes to curl into a fetal position. You might have your daughter try that. My pain usually goes down when im off my feet, but her's seems to be the opposite. im not sure where you live but im checking into going to Indiana University hospital, ercp clinic. the are supposed to be the best as for a pancreatic issues. As soon as i get a referral from my doctor im going. IF you would like the number I will gladly post it for you. I hope all goes well with your daughter and i will keep her in my prayers.
Thank you for responding. She sees a surgeon at Vanderbilt Children's Hospital in Nashville TN. When we were searching for a doc we had the option of this surgeon or one in Indiana. I never found out details on the Indiana guy as we were much closer to Nashville. Her surgeon is great. I think he has performed the surgery that my daughter had on about 11 other children. From what we have learned about this condition it is just so scary because what I have heard and read about the surgery she had and the stints they just don't last. I suppose we were lulled into this sense that she was going to be home free after her last surgery since she has done so well. She had strep throat this week also. Is your pain affected or ever brought on by something like a cold or other infection? The doc said that he did not think the strep was related, but I am praying that somehow maybe the strep just flared the pancreatitis up and it will go away soon. The other thing is that when we were going through all of this last year, no gastro would even consider touching a child of her age and putting in the stints because of the risk involved with the ERCP and the placement of the stints. I never really questioned much about that route as we chose the other one that seemed less risky. What type of risks did they warn you about with the ERCP and stints? They kept telling us that things are so small in that area anyway and then when it is a child it makes things that much more difficult.
Do you know what has caused your ductal obstructions or lack of flow? From what I have learned, most people, unless they have some obvious anatomy problem, don't really have an answer as to why they are prone to pancreatitis. I know this may sound silly, but can you describe the pain for me? I just feel so helpless when she is laying there and telling me it hurts so bad, but she can't verbalize for me exactly where. She mostly will say that it hurts just below her belly button and sometimes in her back. Other times she will just say she does not know, it just hurts all over. Do you hurt all the time, every day? Are you able to work or go to school? She missed most of last week, and is afraid to go to school because she is aftraid the pain will become unbearable there. When all of this happened before, she missed a month and half of school, but luckily it was the last month. The doc wants us to report to him tomorrow how her weekend went and he will decide if they are going to put her in the hosp and get a pic line to start TPN. She knows what that involves and she said that she just wants to go and get it done if it will take her pain away. Thank you so much again for responding and listening to me. I try to explain things about her to my friends and family and they just don't seem to understand why there are not cut and dry answers or fixes for this condition. It is all just wait and see what happens. Thank you for the prayers as well. We likewise will remember you in prayer on your continued journey through this. Thank you.
Well I'll try to explain to you what i typically go thru. Seems like my pancreas pain and pancreatitis pain are kinda seperate. they seem to have different symptoms but as the same,,,if you understand what im trying to say. my stomach stays sore between my ribs right in the center, it's sore to the touch, my bach ached right up the center and it usually hurts in the left shoulder blade, kinda feels like a burning stabbing pain. it hurts under my left rib cage more like a aching burning pain. that's the everyday pain on a scale of 0-10 worst daydays being around 6-7 ok days 3-4 food seems to aggervate it doesnt matter what i eat it will usually affect it, in some way.That's the pancreas pain. Pancreatits is much worse, pain is intense burning stabbing pain hurts when i move or breathe i notice if im not careful i will hold my breath, and usually if i can find a certain spot i will stay there for as long as i can and not move. maybe this description will help you with your daughter. I hate to hear that your daughter is struggling with this it almost makes me cry to think about her because i know what she's going thru.
My docotor really never said there was a whole lot of rick with the stents, I like him to an extent....he's pretty sure of himself almost to the point where im worried to leave my care in his hands much longer. he does the procedures and then sends me home to suffer and he doesn't want much do to help me pain wise after he's giving me pancreatits. then the local docs dont want to touch someone who's been worked on by antoher doc, it's hard. If you have a good doctor stay with him they are hard to come by.
I didnt have any problems unitl i had gall bladder surgery. I had complications from that and ended up in icu for 5 days with a bile leak, they really can't give me an answer either as to why i have these problems. Nobody in my family has issues like this. I still work full time, and i have 3 kids, im on pain meds right now or i dont know how i would make it thru the day. Cant live on those forever so im trying to make my next move. tonight im experincing pain on my lower right side, kinda down my leg and in my back, hoping it's not my appendix.....that's the last thing i need. LOL
i hope they get your daughter back on the road to recovery. I will tell you one thing when my pancreas isn't draining right if affects alot of other things. I can't control my blood sugars, i usually get really bloated and my stomach swells i have trouble with my bowls, get really tired and fatigued, headaches and my blood pressure goes up and down. I know your daughter wont' go thru some of the same things but just keep in mind if she starts to develope other symptoms it may all be related in some way.
Best wishes please keep in touch and let me know how she's doing and ill say a prayer for her everyday .
Hey there! She is doing really well. She was back at the hosp on Tues and her amylase and lypase were back down in the 70s. That was down alot from the 360s just a few days earlier. She is doing great. She woke up with some pain last night, but she had eaten some low fat popcorn and I wonder if her body was really working hard to digest it. We have resorted to a low fat / fat free lifestyle this week and for the rest of her life. As you know, with kids, this is a little tricky. Each time she has had the pancrititis they say to eat low or no fat foods that are easily digestable. Even though the doc says it was not related, I wonder if her having strep throat caused this flare up. Does a cold or infection ever seem to cause things to be worse for you?
I can't help but keep thinking about these stents..... if they don't seem to stay in place, is there not something else that they can do for you? One of my daughter's surgeries was to open up her pancreatic duct. The surgeon went in and slit it open and stitched it to stay open. The way I understand it, sort of like a cannal rather than a tube. Her tube was too small, so they cut it and sort of made a ditch. Does that make sense to you? I don't know what the technical terms are, but you might find it if you google her physician, Wallace Neblett. He wrote an article on pancreatic divisum and the procedure that he has performed on some 11 or so kids with this condition. I don't know if you might be a candidate, but like I said, she has had great success until this flare up, and it's been a little over a year ago. It would seem to me that if you have an inadequate pancreatic duct and the stent helps, when it stays in place, this procedure might be an alternative. If you have trouble finding the article, let me know, I will see if I can find it for you. I will continue to remember you in my prayers - they really do work!!!
At the time of my last attack my lypase levels were almost 8,888. No mistake. I was diagnosed with divisum and am a carrier of the Deltaf508 with chronic pancreatitis. There were two failed attempts to place a stent at the university of Ann Arbor. Last resort is to go from the inside out. This doesn't seem like a good option. I have been looking into going to Chapel Hill North Carolina to see if a doctor there feels they can place a stent successfully. Anyone familiar with the University of North Carolina. I would love any input.
My 13 year old daughter get pancreatitis when she tries to go on meds to treat her ulcerative colitis. Over the weekend she has suffered with rectal bleeding and lots of bathroom trips. I think the only option for her now is to have part of her bowel removed. I think that she had trouble with her pancreas before she was diagnosed with ulcerative colitis 2 years ago.
I put her on digestive enzymes and that stopped the fatty looking bowel movements. I think that a sign her pancreas is not working properly. Well It sounds like other people are having the same problems, and I wish I knew the answer.
I have done lots of studying and praying and talking to many doctors. I work in a pharmacy at a hospital and I have many connections but so far after more then 2 years nothing has helped. The only thing I would say that helped with her joints aching all over would be fish oil and probiotics. I just want her bleeding to stop!
Sorry to hear about your little girl. I too have a 9 year old with pancreatitis. We suspect that strep or any infection, or maybe the antibiotics associated with the infections, seem to trigger an attack. My daughter was diagnosed when she was 5, they did the MRI and found a blocked duct. We live in Maryland, and are lucky enough to have two gastric surgeons in our area who perform procedures on children. We see Dr. Eric Goldberg at University of MD Medical System and we have a lot of confidence in his evaluation of the situation. The pediatricians have no idea what's really happening because they see this in children so seldom. The pediatric gastroenterologist is helpful, but Dr. Goldberg has been our best source of information. They all say that infections dont trigger this, but as parents we think there is a connection based on our observations. Our procedure helped for about 18 months (since 2010) but we are on the roller coaster again, they show about 10% atrophy due to previous attacks. Now we have started an enzyme and antioxidant regimen and a very low fat diet (25-30 grams/day) She seems to be responding positively.
I was wondering if you might be able to update on your daughter? My seven year old was just diagnosed with pancreatic Divisum after months of pancreatitis and dead end after dead end of tests. Currently her doctor is trying to find another doctor to take her case because she does not perform ercp's. Would love a list of questions I should ask and any advice u can offer
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