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Pancreatic insufficiency

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About pancreatic insufficiency

The job of the pancreas is to make enzymes that help us digest food so that it can be absorbed. When the pancreas doesn’t make adequate digestive enzymes, it’s called pancreatic insufficiency. Children who have trouble absorbing nutrients can develop failure to thrive, poor weight gain or weight loss.

What causes pancreatic insufficiency?

The two most common causes of pancreatic insufficiency are cystic fibrosis and chronic pancreatitis. Other, rarer conditions include Shwachman (Diamond) syndrome, Pearson’s syndrome, Johanson-Blizzard syndrome, isolated enzyme deficiencies, pancreatic agenesis and hypoplasia.

How often does pancreatic insufficiency occur?

This condition is uncommon. Cystic fibrosis is the most common cause of pancreatic insufficiency in children, and CF is relatively rare, affecting 1 in 35,000 babies in the United States.

How does pancreatic insufficiency develop?

Children with pancreatic insufficiency often have the problem from birth due to genetic disorders. It can also develop later after pancreatitis, which is an inflammation of the pancreas that can come on suddenly and reoccur. Pancreatitis can come on after an episode of gallstones.

Who is at risk of developing this condition?

Most patients with acute pancreatitis get better and have no further pancreatic problems, but a small percentage of patients develop chronic pancreatitis, which can lead to pancreatic insufficiency.

Why is pancreatic insufficiency a concern?

Patients don’t feel well and may have abdominal pain. Because these children can’t absorb nutrients properly, they don’t grow well and can develop various deficiencies.

How is pancreatic insufficiency diagnosed/evaluated?

Your child’s doctor will likely start with blood tests and stool tests to look for signs of malabsorption. The doctor might also use X-rays, ultrasounds, MRCP or CT tests to check for structural abnormalities or damage in the pancreas. An endoscopic procedure called pancreatic stimulation is used to collect and measure enzyme levels in the pancreatic fluid.

What is the treatment for pancreatic insufficiency?

The treatment depends on the underlying cause. Sometimes there is an abnormality that can be fixed, such as a pancreatic duct that needs to be stretched or gallstones that can be removed. Most patients can be managed with pancreatic enzyme replacement therapy, an oral medication that the child takes with each meal.

What happens after treatment?

Patients who are missing enzymes because of genetic disorders will need to stay on pancreatic enzyme replacement therapy for life.

When should you contact a physician?

If your child suffers from chronic diarrhea and isn’t growing well, talk to your pediatrician.

What is the long-term outlook for pancreatic insufficiency?

That depends on the underlying cause. When the insufficiency is related to an abnormality that can be fixed (such as a pancreatic obstruction), the patient can go on to a normal life. Patients who have insufficient enzymes because of a genetic disorder will need ongoing treatment to ensure proper nutrition and growth. Some patients develop chronic pain as a result of pancreatic conditions.

How do I live with pancreatic insufficiency?

Quite simply, make sure your child takes his or her medicine. It’s the best way to manage your child’s symptoms and optimize growth.
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