Treating Cancer in Children: Managing Mucositis

What is mucositis?

Mucositis happens when the cells that line the digestive tract are damaged by cancer treatment. The digestive tract starts at the mouth, includes the stomach and intestines, and ends at the rectum.

The tissues along the digestive tract become irritated and inflamed. With mucositis, painful sores can form anywhere in the digestive tract. Oral mucositis in the mouth and throat is called stomatitis.

What causes mucositis?

Chemotherapy and radiation therapy can cause mucositis. These treatments kill cells that grow quickly, like cancer cells. But they also damage healthy cells that grow quickly. These include the cells that make up the lining of the digestive tract. Mucositis happens when treatment injures these cells.

Who gets mucositis?

Anyone getting cancer treatment can be affected by mucositis. It often starts about a week or 2 after treatment begins.

Children with blood cancers (leukemia or lymphoma) seem to have a higher risk for mucositis.

Risk is higher in children with low white blood cell counts. This is a common side effect of chemotherapy (chemo) that causes the immune system to not work as well as it should.

Certain chemo medicines are linked to mucositis. These include vincristine, daunarubicin, doxorubicin, and etoposide.

Radiation to the head and neck area increases mucositis risk. If chemo is given at the same time, the risk is even higher.

Younger children are at high risk. About 9 out of 10 children younger than age 12 who are getting chemo get mucositis.

What are the symptoms?

Mucositis starts as redness and gets worse over time. Common symptoms of mucositis include:

• Pain in the mouth, throat, or stomach

• Swelling, bleeding, or wounds in the mouth, throat, or rectum

• Sores or ulcers in the mouth or genital area

• Drooling or not swallowing saliva

• Trouble swallowing

• Refusing to eat or drink

• Very dry mouth

Let your child's healthcare team know about any changes you notice right away. Treatment can help keep these problems from getting worse.

How is mucositis treated?

Ask your child's healthcare provider about treatments that can be used to help prevent or treat mucositis.

Mucositis can and must be treated. It tends to be very painful, so your child may not want to eat or drink. But it’s important that your child does eat and stay hydrated. Your child's healthcare provider will likely give your child pain medicines to make it easier to drink and eat. These may include prescription pain medicine, gels, and numbing rinses or lozenges.

Your child may also be given medicines to help prevent or fight infection.

There are other steps you can take to help ease your child’s pain and to help them eat. Use the tips below and keep encouraging your child to do so.

Keep the mouth clean

• Have your child clean their teeth and mouth exactly as instructed by the healthcare provider. It's common to be told to clean the mouth after eating and at bedtime. If mucositis gets worse, ask the healthcare provider if your child should clean their teeth and mouth more often.

• Give your child a very soft-bristle toothbrush to brush with. If their mouth is too sensitive for a toothbrush, sponge swabs can be used.

• Make sure to replace the toothbrush often.

• Have your child brush gently.

• Have your child rinse their mouth with non-alcohol rinses, antibacterial rinses, salt water, or plain water. These products help remove particles and bacteria, help keep sores from crusting, and soothe sore gums and the lining of the mouth. Ask your child’s healthcare team for suggestions.

Encourage your child to rinse his mouth with recommended non-alcohol rinses, antibacterial rinses, saline, or plain sterile water. These can help soothe sore gums and mouth lining.

Manage pain and infection

• Give any pain medicine prescribed for your child as instructed.

• Don’t give your child over-the-counter medicines, like ibuprofen or acetaminophen unless the healthcare provider tells you to. These medicines can mask a fever, which is an important sign that there's a problem with your child’s health. They can also make it harder for the blood to clot. This raises your child’s risk of bleeding.

• Have your child use a prescription mouthwash as instructed by the healthcare provider. These mouthwashes can help to numb the area and prevent infection. They're sometimes called "magic mouthwashes." 

• Your child may be given antibiotics to treat infected sores. Make sure your child takes these as instructed.

• Encourage your child to brush regularly to clear away bacteria. Ask if it's OK for your child to floss.

Maintain good nutrition

If your infant has mucositis, they'll likely get IV treatments at the hospital. If your child is older, they may also get IV fluids or IV nutrition if eating or drinking is a problem. But if your child can eat and drink, do the following:

• Encourage smoothies, shakes, and other cool foods.

• Purée food with a blender, if needed.

• Serve foods cool or at room temperature.

• Make sure foods are cooked until tender and cut into small pieces.

When mucositis happens, your child's sense of taste may change. This is expected. Be understanding if your child tells you this and doesn't want to eat. Sometimes using a straw can help.

Other tips

• If possible, talk with your child’s healthcare provider about getting a dental checkup and any dental work done before treatment starts.

• Talk to your child's provider about fluoride rinses or gels to help prevent cavities.

• Moisturize your child’s lips with petroleum jelly, lip balm, or cocoa butter.

• Help your child stay away from citrus fruits and spicy or acidic foods. These might burn. Still, it’s OK to allow them if your child wants them. The most important thing is that your child eats.

• Have an overnight bag ready in case you have to go to the hospital.

• If you do go to the hospital, bring your child’s medicine and cancer treatment information.

When to call the healthcare provider

Talk with your child's healthcare providers about what symptoms to watch for and when to call them. You may be told to call right away if your child has any of the following:

• A fever in an infant or child with cancer is an emergency. Take your child's temperature as instructed.

• A seizure caused by the fever

• Refusing to eat or drink

• Urinating less than normal

• Constipation

• Diarrhea

• Mouth bleeding that doesn't stop

• Unable to swallow medicines

• Pain even when taking pain medicines

Be sure you know what number to call and how to get help at any time, day or night.