Feeding and Appetite Changes in Childhood Cancer

"He won't eat" is a symptom, not a cause. St. Jude lists a long set of reasons behind it, and the fix depends on which one you are facing.

Physical causes include nausea and vomiting, fatigue, pain, fever, infection, mouth sores, taste changes, trouble swallowing, digestive problems, and constipation. Some come from the cancer itself. Swelling in the abdomen can press on digestive organs, and swelling in the brain can disturb the signals that create hunger.

Then there is everything else. St. Jude also names depression, stress, anxiety, broken routines, and hospital stays as reasons a child stops eating.

So the first question at clinic is not "what should he eat." It is "why isn't he eating?" A mouth full of sores needs a different answer than a child who is frightened of vomiting again.

Food is one of the few things a sick child still controls, and children know it. Pressure turns a medical problem into a nightly fight that both of you lose.

St. Jude is direct about this: avoid pressure or punishment around food, and work on making mealtimes pleasant instead. Eat outside. Let the child help plan or shop. Serve the food in a way that is fun to look at.

Structure helps more than force. St. Jude suggests three meals and three snacks a day, in smaller portions than usual, held inside a regular routine of sleep, activity, meals, and snacks. Small and predictable beats large and negotiated.

One more piece of timing. Appetite often improves between chemotherapy cycles. St. Jude advises using those better days to catch up on intake, rather than fighting for calories on the worst day of the cycle.

Mouth sores. Sores in the mouth and throat, also called mucositis, make ordinary food painful. St. Jude suggests soft and cold foods: pudding, gelatin, mashed potatoes, macaroni and cheese, applesauce, bananas, ice cream, popsicles, milkshakes, and smoothies. Meats go down better slow-cooked with gravy. Skip salty, spicy, sour, or strongly seasoned foods, and skip rough textures like toast and crackers. For mouth care, St. Jude advises a soft toothbrush after meals and snacks, gentle flossing, a foam brush dipped in water if brushing hurts too much, and a mouth rinse only if the care team recommends one. Its recipe for a homemade rinse, offered to clear a bad taste before eating, is 1 teaspoon of baking soda and three-quarters of a teaspoon of salt in 1 quart of water.

Taste changes. Metal mouth is real, and it is not fussiness. St. Jude suggests chicken or fish instead of beef or pork, marinating meats, and leaning on strong flavors like citrus, chocolate, and barbecue. Sauces and seasonings help. So does sipping a drink between bites to clear the mouth.

Nausea. St. Jude recommends plain, bland foods such as cereal, rice, noodles, toast, and canned or fresh fruit. Offer something dry, like crackers, before the child gets out of bed. Cold or room-temperature food smells less. Aim for 6 to 8 small meals a day, keep solids and liquids separate by drinking between meals rather than during, and prepare food away from the child so cooking smells do not reach them.

Dry mouth. Push fluids. Add butter, gravy, and sauces to make food easier to move. Ice chips, popsicles, gum, and hard candies help, along with frequent mouth rinsing.

Constipation. This one is easy to miss and often explains a lost appetite. St. Jude suggests fruits, vegetables, whole grains, dried fruit such as prunes and raisins, and beans, plus warm drinks. Ask the team before starting any laxative, because some are avoided when blood counts are low.

Diarrhea. Bananas, rice, applesauce, and toast work as a short-term plan, along with soluble fiber like oatmeal. St. Jude advises avoiding caffeine, dairy, sugary and carbonated drinks, spicy or high-fat foods, leafy greens and peels, beans, cabbage, cauliflower, and broccoli.

When a child will only eat a small volume, change what is in the volume. St. Jude suggests adding butter, oil, cream, powdered milk, protein powder, or peanut butter to ordinary foods, and using milkshakes, smoothies, and thick soups as delivery systems.

This is the opposite of normal healthy-eating advice, and that trips parents up. During treatment, whole milk beats skim, and full-fat yogurt beats low-fat. Weight and growth matter more right now than a balanced plate.

Ask for the dietitian by name. Pediatric oncology dietitians do this every day, and they can calculate what your child actually needs rather than guessing.

When treatment lowers white blood cells, ordinary foodborne germs become dangerous. The FDA's guidance for people with cancer names specific things to drop:

• Unpasteurized milk, and soft cheeses made from raw milk such as feta, brie, camembert, blue-veined cheeses, and queso fresco. Pasteurized milk and hard cheeses, cream cheese, and mozzarella are the safer swaps.
• Raw or undercooked eggs. Use pasteurized eggs in recipes that call for raw egg.
• Raw or undercooked meat and poultry.
• Raw fish and shellfish, sashimi, ceviche, and refrigerated smoked fish.
• Unwashed vegetables and raw sprouts.
• Cold deli meats and hot dogs, unless reheated to steaming hot, meaning 165 °F.

The FDA's safe cooking temperatures are worth taping inside a cabinet: ground beef 160 °F, all poultry 165 °F, egg dishes 160 °F, and fin fish 145 °F. Use a food thermometer rather than judging by color.

Appetite stimulants exist and are used in pediatric oncology. St. Jude names cyproheptadine, sold as Periactin, and dronabinol, sold as Marinol or Syndros, along with steroid medicines.

These are prescription decisions with real side effects, and steroids in particular affect mood, sleep, and blood sugar. Ask whether one is appropriate, what to watch for, and how long the trial should run before you judge it.

Families often treat a feeding tube as the moment they failed. It is better understood as a tool that takes food out of the fight.

St. Jude describes two routes. Tubes placed through the nose include the nasogastric (NG) tube into the stomach and the nasojejunal (NJ) tube into the intestine. Tubes placed through the abdominal wall in a procedure include the gastrostomy (G) tube and the gastrojejunostomy (GJ) tube.

Feeds can run three ways: bolus feeds spread through the day like meals, continuous pump feeds over long periods up to 24 hours, or gravity feeds dripping from a bag, which St. Jude calls a low-tech option that works well at home.

Side effects include nausea, vomiting, cramps, diarrhea, constipation, and bloating, plus tube displacement and infection at the site. Keep the child upright during feeds, and throw out prepared formula after 24 hours.

Many children keep eating by mouth with a tube in place, which protects the skill for later.

Call the oncology team the same day for any of these:

• No wet diaper for 3 hours or more in an infant or young child, crying without tears, dry mouth and tongue, sunken eyes, unusual sleepiness, or irritability. MedlinePlus lists these as dehydration signs in children.
• Vomiting that stops the child from keeping down fluids or medicines.
• Rapid or ongoing weight loss, new weakness, or confusion and changes in mood or behavior.

Go to an emergency department for confusion, fainting, no urine at all, rapid heartbeat, or fast breathing.

During chemotherapy, a fever is separate and urgent. For children over 2 months, St. Jude defines fever as an oral temperature of 100.9 °F (38.3 °C) or higher, or an oral temperature of 100.4 °F (38.0 °C) or higher that lasts an hour. Under-the-arm thresholds are lower, and thresholds differ for babies under 2 months. Your team's own numbers come first, and a fever during chemotherapy means calling the oncology line straight away.

For symptom-specific help, see Eating When You Have No Appetite, Eating When Food Tastes Different, and Eating with Mouth Sores. For tubes, see Feeding Tube Basics During Cancer Treatment. Also useful: Childhood Cancer Scans and Scanxiety and Fertility Questions for Childhood Cancer Survivors.

• Eating Hints: Before, During, and After Cancer Treatment, National Cancer Institute
• Loss of Appetite and Weight Loss in Children with Cancer, Together by St. Jude
• Nutrition and Side Effects in Childhood Cancer, Together by St. Jude
• Enteral Nutrition (Tube Feeding), Together by St. Jude
• Food Safety for Older Adults and People with Cancer and Other Conditions, U.S. Food and Drug Administration
• Food Safety for People with Cancer (booklet PDF), U.S. Food and Drug Administration
• Fever and Signs of Infection, Together by St. Jude
• Dehydration, MedlinePlus, National Library of Medicine