Chronic Pancreatitis and Acute Recurrent Pancreatitis

Inborn Error of Metabolism

Chronic pancreatitis is an inherited condition often caused by a faulty gene, which disables an enzyme that helps the body digest food. As a result, the pancreas (a gland found in the abdomen, near the stomach) becomes inflamed. Ongoing inflammation can cause irreversible scarring of the pancreas. Children with chronic pancreatitis often have severe abdominal pain. They may also have trouble digesting food, lose weight, and not grow normally. They have an elevated risk of developing diabetes. Children with repeated episodes of acute pancreatitis may have the same symptoms and may also have the faulty gene, although they have not been diagnosed with chronic pancreatitis.


Mark Lowe, MD, PhD

Chief, Division of Gastroenterology, Hepatology, and Nutrition

An internationally recognized expert on childhood pancreatic disorders, Dr. Lowe leads a National Institutes of Health supported laboratory investigating pancreatic digestive function and mechanisms of chronic pancreatitis.


What to Expect

If your child has been diagnosed with chronic pancreatitis or acute recurrent pancreatitis, we want you to know that you are not alone – the Center for Rare Disease Therapy is here to help. Here’s what you can expect when you come to us for a consultation.

How quickly can we get an appointment?

At the Center for Rare Disease Therapy, a doctor specializing in pancreatic disorders can usually see a new patient with chronic pancreatitis or acute recurrent pancreatitis within 1 to 2 weeks. To make an appointment, please call Jodie Vento at 412-692-7273 or send an email to rarecare@chp.edu. We will ask the referring doctor to send us a copy of the child's medical records as soon as possible so that our doctors can review the records before your child’s appointment.

How long should we expect our first visit with the doctor to take?

Depending on what kinds of testing and evaluation your child has already had, you can expect your first visit to take at least 2 hours. If your child is being evaluated for surgery on this visit, he or she will be seen by several doctors and other health care professionals. The surgical evaluation will take about 8 hours over 2 days.

What will happen during our first visit?

Your child will receive a complete evaluation to establish or confirm a precise diagnosis and determine how much the disease has affected the child. Because we work as a team here at the Center for Rare Disease Therapy, during your visit your child may be seen by several doctors and other health care professionals. These other health care professionals may include a pain specialist, dietitian, endocrinologist, surgeon, psychologist, genetics counselor, and social worker.

We understand that the whole family is affected when a child has a rare disease. We see each family as our partner in caring for their child. We think the best approach to caring for a child with a rare disease emerges when we combine our depth of experience in rare diseases with your expertise in what’s best for your child.

We will talk with you about what we think is likely to happen with your child in the near future and about options we can suggest for treating and caring for your child. If surgery is an option for your child, we will help you understand what the surgery entails and what you may need to do to prepare for it. We will also talk with you about what you can do at home to care for your child and improve his or her quality of life. Please feel free to ask our specialists any questions you have about your child’s disease, treating and caring for your child, or anything else that is on your mind.

By the end of your visit, you will have a care plan tailored to your child’s needs and an appointment for a follow-up visit in 3 months. You will be introduced to our clinical nurse practitioner, who is available by phone or video conference to help you with any concerns you have between now and your next appointment.

How long might we have to wait for test results?

Depending upon the types of tests that the doctors order, you can expect to receive a phone call within 2 weeks to explain test results and discuss recommended next steps. Test results are also made available on Children's patient portal, myCHP, which is provided at no cost to patients, parents, and guardians.


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Contact Us

At the Center for Rare Disease Therapy, every child diagnosed with a rare disease receives an individualized treatment plan and family-centered care.

For an appointment, consultation, or patient referral with an expert at Children’s Hospital of Pittsburgh of UPMC for a child diagnosed with chronic pancreatitis or acute recurrent pancreatitis, please contact:

Jodie Vento, MGC, LCGC
Phone: +1-412-692-RARE or 412-692-7273
Email: RareCare@chp.edu

Clinical Studies

Pancreatitis INSPPIRE Registry

A Study of Acute Recurrent and Chronic Pancreatitis in Children by the International Study Group of Pediatric Pancreatitis In Search of a Cure (INSPPIRE)

Read more