I am trying to find help for my daughter who has lost over 45 pounds since december. When she was six she had pancreatitis, psedocyst, gallbladder removed due to stones and infection. She had what I called cycles ever since but the cycle I could handle, it was only a short time she couldn’t eat and wasn’t losing much weight. In December 2009 she started getting a sinus infection and started to complain that her abdomen was hurting and that she was nauseas. This continued on into January 2010 when she had her first ng tube placed. She was started on elecare formula. It was a daily thing for her hurt and feels nauseas and vomiting. She has had ultrasounds, blood work, stool tests, xrays done and nothing showed up, she has been told it is all in her head. She has gone to eight psychologists and one of them who dealt with pain. I have had only one say that she was anxious but that was in March. She was tested for cystic fibroises, had the nuclear emptying of the stomach scan and nothing is showing. The doctor who dealt with the pain said it is physical and there was not much he could do to help. In February she had her ng tube changed into a NJ tube due to hoping it will relive her of her pain. In March she had another acute pancreatitis. Her numbers were not going down fast. They tried the nj tube after the numbers were going down and up, but could not get very far due to severe pain. So they placed her first picc line in on march and feed her tpn. We went and seen a doctor in Winston Salem, NC and he ran a egg but she could not drink enough so they called the test unable to read. She was on tpn for about three months and then got a line infection and they tried the nj tube and it worked. So we started back on elecare formula through the tube. In July 7 we went and seen Doctor cotton in Charleston, SC and he did a ercp and found out she has spinchter of the oddi dysfunction. He cut the muscle and put a stent in that only lasted for 3 hours. They place a new ng tube in well she was asleep. She left Charleston being on a clear liquid diet, on July 10 she ate real food which caused her to get sick but we went back to soup and she was eating some. She would be on elecare to make sure she got enough claories. This went on for a week. Then we moved her up to a solid clear liquid diet. She went off the diet a little but was able to keep it down. That Friday which would have been three weeks since she had the ercp done she throw up her tube and we placed it back in as a ng tube. She was vomiting so much that Monday it was placed back as nj tube. We have been in and out of the hospital mostly in. They tried to just force through the pain and we got her to the goal for 2 days to where she was just screaming in pain. They tried to run just pedialyte through the nj tube at a rate of 30ml/per hour and it was causing her a lot of pain. At that time as long as you didn’t put anything in the mouth or nj tube she was pain free and was not nauseas. After trying the nj tube for 2 weeks in hospital they deiced to put another picc line in. There was trouble putting the picc line in due to her veins spamming and her veins are small for her age. The picc line lasted for 3 days and then her arm started to be swollen and red. They end up pulling the pic line and we had a port put in. She is now on tpn and still in a lot of pain. That pain started after they put the port in and gave her narcotics. We are hoping things will calm back down and the pain will go away. Our local doctors are telling me they don’t know what Is wrong with her GI system, that they have never seen this before and do not know what to do from here. So I am wondering if you know a GI doctor that is in a large city and that deals with rare things because I have been told with whatever she has it will be rare. Any help would be greatly appreciated I would like to be able to call my house home and not the hospital home. I would to like be able to find out what this is and at least have some answers on if this is going to get better or worse. I would like for her to be able to eat if at all possible. I would like to hear that she just doesn’t have to deal with the pain, but there is a way to ease her pain to where she can play and run around and be at home with her family again. Again thank you for reading and any advice would be helpful.
PLEASE contact the Cincinnati Childrens Hospital located in Cincinnati Ohio. They are the premier unit in the country for Pediatric Gastroenterology, and people travel from all over the country to have their children treated there. They can help your daughter! They have a Ronald McDonald House for you to stay in and be with your daughter. Don't wait on this. I wish you all the best, and your daughter will be cared for by the best doctors in this field. Take care.
I love my son's gastroentrologist. He had abdmonial pain and nausea every day. All of our local doctors couldn't find anything wrong and kept telling me it was anxiety. I know my son, and it was not anxiety. Finally, I was recommended to a pediatric gastroentrologist at Rainbow Babies and Childrens Hospital in Cleveland. She has been awesome, and she is a very caring doctor.
After missing 1.5 years of school, my son just returned back to school 2 weeks ago. He is feeling much better. He has dysautonomia and gastroparesis. Our local doctor refused to even run the gastric emptying test for gastroparesis, saying it doesn't usually happen in kids, yet my son has it. Dr Gisela Chelimsky is her name.
Write a letter to your insurance company regarding this. Let them know that your local doctors are at a loss, and you fear what may happen if they don't pay for you to seek a second opinion elsewhere at a more reputable facility. They know they could face some liability here, and just hinting at it may get the okay to get that second opinion. Also, you can call the AMA and ask for the BEST Pediatric Gastroenterologist in your city and they will tell you who that is. This is how we finally got the proper diagnosis for our son. It was the 4th gastro doc he saw, even after being at the Cleveland Clinic, it was Cinti. Children's who finally properly diagnosed him.
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