Caregiver Guide | Pediatric Brain Tumor Side Effects and Symptoms

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Brain Tumor Treatment Symptoms and Side Effects in Children

Children may not experience the same brain tumor side effects and symptoms as adults. Because their brains and bodies are still growing, they may experience symptoms and side effects that are unique to their age and stage of development. As background, you may want to read more about how to manage some of the common physical and cognitive changes that both adults and children with brain tumors can experience.

On this page, however, you will learn more about the symptoms and side effects that are unique to children, adolescents and young adults with brain tumors.

Physical side effects

Side effects from treatment occur because healthy cells are damaged in the pursuit of eradicating cancer cells. They can occur right away, or manifest themselves years later.

Some examples include:

  • If your child has a central venous line to transmit chemotherapy medication (also called a CVL, a port or a central line) it may cause an infection. A fever and chills may indicate infection, as may redness, swelling or pus at the site of the port.
  • Fever and chills may also be the sign of a blood infection as chemotherapy or radiation may damage some of the cells that typically fight off infections.
  • Anemia, or low red blood cell count, can also be a side effect of cancer treatment. When the red blood cell count is low, it lowers the amount of oxygen in the body, causing tiredness, shortness of breath, headaches and dizziness.
  • Cancer treatments to the head and neck can also cause mucositis, or mouth sores. These can be relieved by drinking plenty of fluids and rinsing the mouth several times a day. However, if the sores are particularly painful or lead to decreased eating and drinking, talk to your health care team about other treatments available.
  • Fatigue from treatment is a common side effect. Regular, appropriate exercise and a consistent sleeping schedule can help relieve this symptom.
  • Pain is another common side effect, whether from the tumor itself, from side effects such as mouth sores, or recovery from surgery. There is much you and your child’s medical team can do to make your child more comfortable.

No one needs to tough out serious side effects. Talk to your medical team about any symptoms that your child has. There are many medications and treatments available to ease side effects.

Eating and nutrition issues

The side effects of treatment may also cause children to change their eating patterns. To combat the cancer and handle treatment, the body may need additional nutrition, or it may use the nutrition it receives in a different way.

  • Nausea and vomiting are common side effects of brain tumor treatments such as chemotherapy or surgery itself. It is helpful to record incidents of nausea and vomiting as anti-nausea medications may be available to relieve symptoms.
  • Taking steroids may cause children to have a dramatic increase in appetite.
  • Radiation therapy may cause irregular eating patterns, or alter how foods taste – children may describe foods as having no taste, or being too salty, too sweet, or even metallic-tasting. Other feeding/eating issues include loss of appetite, feeling full although no food has been eaten, or experiencing diarrhea, cramps, constipation, a sore throat, or a dry mouth.

Emotions can run high during mealtime for any family – and even more so for those dealing with a brain tumor and treatment. If possible, try to be as understanding as possible at mealtimes. There will be on and off days as far as eating is concerned.

In addition, although you may want to maximize nutrition during this time and only stick to “healthy” foods, remember that sometimes, eating favorite foods can be both a source of pleasure and calories. Check with the child’s medical team anytime you have questions about eating issues. Dieticians who specialize in eating during cancer treatment can help answer many of your questions.

Other tips for dealing with eating changes:

  • Keep fluid intake up and avoid dehydration by offering small amounts of liquid frequently. You can even provide multiple teaspoons full during relaxing activities such as reading or watching TV.
  • Easy-to-digest foods, such as crackers, rice, toast or soup may “stay down” better.
  • If your child is losing weight, add extra calories to everyday foods. Adding peanut butter to toast or instant breakfast mixes to milk can increase their caloric value.
Changes in physical appearance

Losing hair, surgical scars, or gaining or losing large amounts of weight all can be devastating to self-esteem and self-image, particularly to those in adolescence. These changes can also be devastating to parents as well.

Be open and honest with your child about what may happen, and include them in discussions about how to manage these changes. In addition, be honest with yourself. Although your child’s appearance may be disheartening, remind yourself that they are the same person inside, and make sure to show and articulate that you love them no matter what they look like.

Additional tips to help with changes in physical appearance include:

  • If your child wants to try a wig, there are several national groups that provide free wigs for children (including Locks of Love and the Look Good, Feel Better program of the American Cancer Society). Consider buying one before treatment begins so you can match your child’s hair color.
  • Other children may prefer to wear a baseball hat or bandana.
  • Steroids may cause acne, weight gain, and the appearance of a puffy face. Prepare your child for these potential changes, allow them to vent, and validate their feelings.
  • Humor can be a wonderful way to handle these conversations. Humor also works well to break the ice to begin talking about appearance with the child’s peers.
  • It can also help patients to meet with others who are undergoing the same experience. The ABTA has a nationwide listing of brain tumor support groups as well as an online support community called Connections.

Cognitive and emotional side effects

Many changes during the brain tumor journey depend on factors including a person’s age, tumor type and location, treatment type and duration. In addition to the common personality and emotional changes patients undergo, children are still in the midst of development and may experience other psychological symptoms.

Previously independent children may become more clingy. Others may show regressive behavior, and others may experience cognitive symptoms, such as having trouble reading or speaking. Mention any and all changes to your care team as they have resources and experts who can help children manage these changes.

Long-term or Late Effects

In addition to side effects experienced during the disease state and treatment, children who have experienced brain tumors can exhibit what are called late effects – side effects of treatment that present themselves months or even years after treatment ends.

Typical aftercare protocols include yearly monitoring for potential late effects. Most large pediatric brain tumor treatment hospitals and organizations have long-term survivor programs that include health monitoring and intervention services well into adulthood. Follow up can also be provided by your child’s pediatrician, the pediatric neuro-oncology team that treated your child, or the medical team at a long-term follow-up clinic (LTFC). A current list is here.

The most common types of late effects are listed below.1

  • Changes to the endocrine system. Damage to these hormone-producing hormones due to the tumor or treatment can cause pituitary problems, growth hormone deficiency, early sexual maturation, obesity and thyroid problems. While none of these conditions are life-threatening, they should be monitored as treatments are available.
  • Neurocognitive problems are an unfortunate potential side effect of childhood brain tumors. These can vary widely, and can affect intellectual ability, academic achievement, memory and attention. Potential problems can be assessed by a pediatric neuropsychologist who can help determine the types of issues that need to be addressed and their treatments.
  • Neurological and neurosensory problems can appear soon after a diagnosis but can also develop long after treatment has completed. These can include impaired vision and hearing.
  • Children may also experience social, psychological or behavioral late effects. These can be triggered by events such as transitioning back to school or dealing with peer relationships. While many children go on to be psychologically healthy, childhood brain tumor survivors are more at risk for feelings of social isolation, difficulty relating to peers, depression and less-than-optimal educational and professional achievement. Late- effects intervention can include counseling with a psychologist or social worker.

Many families continue to record side effects long after treatment has ended, and it may also be helpful to create a medical data sheet to share with new medical professionals as the child grows up to more easily communicate the child’s history and potential risks.

In a recent study, approximately one-third of parents of brain tumor survivors experienced parenting problems for which they did not receive help.2 Difficulties in caregiving can last far beyond the initial treatment of a child. Asking for help is both normal and expected. For more resources, read:

 

1A Resource Guide for Parents of Children with Brain or Spinal Cord Tumors. Children’s Brain Tumor Foundation. 2012. p. 99-106.

2Aukema E, Last B, Shouten-van Meeteren N, Grootenhuis M. “Explorative study on the aftercare of pediatric brain tumor survivors: a parents’ perspective,” Support Care Cancer. Oct 2011; 19(10): 1637–1646