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Derek Aguiniga of Apple Valley, Calif., was 7 when the attacks of severe abdominal pain began.
“We kept taking him to the emergency room at our local hospital here in California, and they kept telling me they had no idea why this was happening,” recalls Derek’s mother, Nicki.
One Saturday when Derek was 9 and spending the day at his grandparents’ house, he had a particularly painful attack.
“It felt like a stabbing ache on my insides,” he wrote later in a report about his experience for a school project.
When the antacid his grandmother gave him only made the pain worse, Derek’s grandfather took him to the emergency room.
An emergency room doctor ordered a blood test for lipase and amylase, enzymes produced by the pancreas (a gland found in the abdomen, near the stomach) that helps digest food. Elevated levels of lipase and amylase in the blood are signs of pancreatitis, a rare condition that prevents food from being digested properly and causes painful swelling and inflammation of the pancreas.
Sure enough, Derek’s blood test came back showing levels of lipase and amylase way above normal. The next thing he knew, he was in an ambulance on his way to Loma Linda University Children’s Hospital, 50 miles from the family’s home.
Derek spent the next five days in the hospital. Further tests showed that he had a form of hereditary pancreatitis, caused by a faulty gene that disables an important enzyme in the pancreas.
His doctors placed Derek on a strict low-fat diet. But the pain would return whenever he was physically active. He had to stop many of his activities, like playing football, riding a bike, and horsing around with his friends.
“The doctors told me...if I were playing and got hit in the stomach, it could be life threatening,” Derek wrote in his report for school.
At times the abdominal pain would get better, then come back worse than ever. Derek was vomiting almost daily and had to be hospitalized frequently for pain control. Too sick to attend school, he was enrolled in a home-school program.
Looking for answers, Derek’s mother began searching the Internet. She joined the National Pancreas Foundation and a contact she made there gave her the name and phone number of Mark Lowe, MD, PhD, an internationally recognized expert on pancreatitis in children and director of the Pancreatic Center at Children’s Hospital of Pittsburgh of UPMC.
Dr. Lowe reviewed Derek’s medical records and thought him a good candidate for a novel procedure call a total pancreatectomy with autologous islet-cell transplantation, or TPAICT.
Children’s is one of only a very few centers in the United States with the expertise to offer TPAICT to children with acute recurrent or chronic pancreatitis. Highly skilled surgeons first remove the patient’s pancreas. (That’s the “pancreatectomy” part of the procedure).
The doctors extract the islet cells, special cells in the pancreas that make insulin, which the body needs to convert food into energy. In the final step of the complex procedure, the islet cells are given back to the patient by an infusion into the liver. (That’s the “islet cell transplantation” part. “Autologous” means the patient receives a transplant of his or her own islet cells.)
After a TPAICT, patients must take pancreatic enzymes for the rest of their lives to enable them to digest food. Some patients develop diabetes and need to take insulin. But studies suggest that that most children who have a TPAICT get pain relief and have better quality of life than they did before having the surgery, says Dr. Lowe.
Patients who may be candidates for a TPAICT at Children’s must first have a lengthy pre-surgical evaluation to confirm that they are healthy enough to undergo the procedure and that the benefits outweigh the risks. Early in December 2010, Derek and his mother flew to Pittsburgh for his evaluation, which took 14 days.
In addition to blood tests and x-rays, the evaluation included a CT (computed tomography) scan, an MRI (magnetic resonance imaging) scan, a glucose tolerance test to check how his body was breaking down sugar, and more.
To get his mind off all the poking and prodding, avid football fan Derek was thrilled to have the opportunity to meet several players for the Pittsburgh Steelers, get their autographs, visit the Steelers’ practice field, and try on several Superbowl rings. “My favorite part was trying on Troy Polamalu’s helmet,” Derek wrote.
After all the test results came back, they were reviewed by Dr. Lowe and a team of other doctors, who then gave the go-ahead for Derek’s surgery. The procedure was scheduled for December 21, 2010.
“While most 4th graders were getting excited for Christmas, I was trying to get ready for my surgery,” Derek wrote.
The 13½-hour operation was successfully performed by Dr. Abhinav Humar, clinical director of the Thomas E. Starzl Transplantation Institute and chief of transplantation in the Department of Surgery at UPMC.
Four years later, Derek, now 13, is back attending school, where he is in the 8th grade.
“Everyone said we shouldn’t be surprised if the operation stunted his growth,” says Nicki. But “everyone” turned out to be wrong: At 5 feet, 11 inches and 143 pounds, Derek is taller than his mother and still growing.
In addition to the pancreatic enzymes he needs to take to digest food, Derek also takes a low dose of insulin to supplement the insulin made by the islet cells that were transplanted into his liver.
Although he still has some abdominal pain, Derek says it’s “nothing” compared to the pain he had before the operation.
He still hankers to play his favorite sports, football and wrestling, but his doctors have advised against his playing contact sports. “We’re encouraging him to try volleyball or swimming, but so far he’s resisting,” says Nicki.
Despite some ongoing challenges, Derek “is doing way better than I ever expected,” she adds.
And Derek’s ambition now? To become a gastroenterologist and help children with pancreatitis.
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