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Polyposis Syndrome

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Adults get polyps — not kids. Right? At least, that’s what you thought until now.

You’d never imagine your child could have lots of polyps (small, tumor-like growths) in their colon (large intestine) or other parts of their digestive (gastrointestinal or GI) system. So finding out they have polyposis syndrome can leave you confused and with a lot of questions.

Most often, these polyps are noncancerous (benign). But they can sometimes become cancerous (malignant) over time or increase your child’s risk of other cancers. That’s why getting a clear diagnosis and a personalized treatment plan is important. At Cleveland Clinic Children’s, you’ll work with leading experts who’ll answer all your questions about polyposis syndrome, give your child the highest level of care and support your family every step of the way.

Why Choose Cleveland Clinic Children’s for Polyposis Syndrome Care?

Specialized equipment:

Our Pediatric Endoscopy Suite and Infusion Center offers the latest technology, including high-definition endoscopes and monitors. This helps us to better diagnose and plan treatment for your child.

Caring approach:

Our providers carefully explain treatment options to you and your child so you can take an active part in decision-making throughout the care process. And we’ll work with you to craft a personalized treatment and follow-up plan to keep an eye on your child’s health going forward. Meet our team.

National recognition:

Cleveland Clinic Children’s is a trusted healthcare leader. We’re recognized throughout the U.S. for our expertise and care.

Virtual visits:

When your child doesn’t feel well, getting them dressed and into the car can be stressful for both of you. We understand. That’s why we offer virtual visits so you can talk with your child’s providers from the comfort of home, using your smartphone, tablet or computer.

Polyposis Syndrome Diagnosis at Cleveland Clinic Children’s

At your child’s first appointment, we’ll start by asking about your family’s medical history. We’ll also give your child a physical exam and check their rectum (the last portion of their large intestine before their anus) to look for polyps.

Your child will have blood tests to check for low red blood cell levels (anemia) and other conditions. Because many types of polyposis syndromes come from genetic changes (mutations), we might also recommend genetic counseling and testing.

Your child might also have a capsule endoscopy. During this test, your child will swallow a small capsule that contains a tiny camera. The camera takes pictures of your child’s digestive tract as it moves through their body — letting us easily look for polyps along the way. Don’t worry. The camera won’t stay in your child’s body. It’ll come out when they poop.

If results point to polyposis syndrome, we’ll then likely do a colonoscopy to help confirm the diagnosis. Your child will be asleep during this test and won’t feel any pain or discomfort. During the test, the provider will insert a long, flexible tube through your child’s rectum and into their large intestine to look for polyps.

We’re usually able to surgically remove polyps (polypectomy) during a colonoscopy and/or endoscopy. Then we can test the polyps to see if they’re benign or cancerous. This helps us begin a treatment plan for your child.

Meet Our Hereditary Polyposis Syndrome Team

At Cleveland Clinic Children’s, your child will get care from our team of expert pediatric providers, including:

Gastroenterologists (digestive system specialists).
Surgeons.
Dietitians.
Child psychologists.
Child life specialists.
Social workers.
Genetic counselors.
Nurse practitioners.
Physician assistants.

Provider Who Treats Polyposis Syndrome

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Polyposis Syndrome Treatment at Cleveland Clinic Children’s

Once we confirm a diagnosis, we’ll put together a personalized care plan. Treatment will depend on the type of polyposis syndrome your child has and how bad it is. Besides a colonoscopy, there are other treatment options we can use while your child is asleep from sedation. They include:

Endoscopy

Our provider will guide a flexible, narrow tube with a light and tiny camera (endoscope) down your child’s throat. This lets them see inside your child’s digestive tract and remove polyps, if needed.

Argon plasma coagulation (APC) ablation

This procedure uses argon gas and a high-voltage spark to remove polyps. We’ll use APC ablation to reach polyps in areas that may be hard to get to with an endoscope.

Balloon enteroscopy

Our provider will insert an endoscope through your child’s throat and into their gastrointestinal (GI) tract. The endoscope includes tiny inflatable balloons that move easily through their GI tract as they inflate and deflate. The balloons let the endoscope reach areas that are hard to get to. We can remove polyps during this procedure, if needed.

Colectomy

If your child has a lot of polyps, if the polyps are cancerous, or if your child has a high cancer risk, we may suggest removing part or all of their colon (colectomy), often with minimally invasive surgery. After surgery, your child’s intestinal tract might still be able to work as usual, letting them poop normally. If not, we’ll create a new way for them to do this. We’ll take the time to walk your family through all options so that you feel as informed and comfortable as possible with the next steps.

Follow-up care

After treatment ends, we’ll regularly see your child to keep an eye on their health. We want to be able to find and handle any changes right away. Your child will also need a colonoscopy or endoscopy each year. This lets us check for and remove any new polyps. If your child doesn’t have any new polyps, we then start seeing them every three years for these tests.

Depending on your child’s diagnosis, we may also recommend annual checkups, including blood tests and other screening tests. We’re here to make sure your child feels their best, and to give you peace of mind.

Taking the Next Step

Learning your child has polyposis syndrome can be unsettling for them and for you. We’re here to ease your fears. We’ll give your child expert, compassionate care to thrive, and we’ll offer support to you and your family along the way.