Some children with brain tumours who are treated with surgery, radiation therapy or with certain types of chemotherapy develop problems with learning. These problems may be obvious right away or may develop slowly and appear one to two years after treatment has ended. These delayed problems are called neurocognitive late effects.
If your child is at risk of developing these problems, you and your child’s health-care team and teachers will need to work together to make sure your child has the extra help they need. In some cases, a neuropsychological assessment may be needed to help understand your child’s abilities and areas needing special education services.
What difficulties and late effects can a child experience after a brain tumour?
Some of the difficulties and late effects that children with brain tumours may experience are:
- Drop in IQ (intelligence quotient).
- Handwriting and fine motor problems.
- Speech/language problems: A child may have difficulty speaking clearly or retrieving words when talking.
- Attention and concentration problems: A child may be inattentive, hyperactive, or both. They may not be able to concentrate for more than short periods of time They may have trouble holding information in mind.
- Slowness: It takes a child longer to do tasks or understand things than before or compared to other children.
- Memory: A child may study a topic many times, but not remember it the next day.
- Planning and organizing: A child might have difficulty finishing assignments, expressing ideas in writing or verbally, or finding the way to school.
- Spelling problems.
- Reading problems.
- Math problems.
- Completing daily tasks or chores independently.
What causes late effects?
The brain is made up of different regions that each have specific functions. Tumours in certain parts of the brain can affect the functions of that specific region or functions that rely on broader networks that include that region. The brain has many thinking cells (neurons). These cells are connected by electrical pathways (axons). A type of insulation called white matter (myelin) surrounds these pathways. It increases the speed of communication between cells.
Sometimes, radiation or certain chemotherapies damage this insulation, or white matter. As a result, the messages that travel back and forth along the pathways between thinking cells are not delivered as fast or effectively. Some treatments, such as radiation, may also damage blood vessels in the brain. Additional factors, such as seizures or increased pressure of the fluid in the brain (hydrocephalus) can also damage brain cells and affect brain functioning.
Who is the most at risk of developing difficulties and late effects?
Research has shown that several different factors can affect the risk of developing difficulties and late effects. These include:
- The type of brain tumour and where it is located in the brain.
- The type of treatment required. For example, whole brain radiation does more damage to a developing brain than focal or more targeted radiation methods of treatment. With chemotherapy, children who received intrathecal methotrexate are more likely to need special education services.
- Age at treatment. In younger children, the nervous system is less developed and more likely to be damaged by treatments. Children under the age of three are more likely to suffer serious effects.
- Sex of child. Several studies have shown that girls are affected more often and more severely than boys. Nobody knows why exactly.
- Associated complications, such as hydrocephalus, seizures and hearing loss.
Can late effects be prevented?
Doctors try to reduce the potentially toxic or negative effects of treatments as much as possible. For example, they may try to delay radiation therapy as long as they can, because it affects the cognition and learning of younger children more.
How can late effects be treated?
At school
Experience has shown that the best way to teach children with cognitive or learning problems is by using direct, one-on-one instruction. If your child is not getting extra resources at school, find out what they are entitled to have and try to find ways to make sure they get it.
Early interventions are important. Try to meet with a neuropsychologist to get as much information as possible. In general, children in kindergarten and grade 1 need to develop their basic reading, writing, and math skills as much as they can, even beyond what their classmates are doing. Extra tutoring or other supports are important even at this stage, before you see any changes.
Some children may need to use special education services. Some may do just fine in high school and go on to university, while others will do better in a vocational program.
At home
At home, children can benefit from an environment rich in language and numbers. Reading lots of stories, doing number rhymes and counting together, and working on math and reading exercise books will help. School-aged siblings may be able to help as well. Teachers or a school liaison person may be able to recommend good resources to use at home.
Children may find it difficult to learn a second or third language. This may be an issue for families who speak more than one language, or who do not speak English at home. The treatment team may have suggestions to deal with this issue.
Neuropsychological assessment
A neuropsychological assessment can help to provide some specific recommendations for your child in the classroom setting. This type of assessment is conducted by a neuropsychologist who works within the hospital. Speak to your treatment team for a referral to a neuropsychologist. For more information, see the "Neuropsychological Assessment" page in this section.
The school can conduct a similar but less detailed type of assessment called a psychoeducational assessment. For either type of assessment, a report will be written and will include suggestions that are specific for your child. Some of the following suggestions may be appropriate for some children:
- Seat the child near the front of the classroom to help focus and avoid distraction.
- Provide less written work.
- Use visual tools to teach such as charts and illustrations.
- Provide assistance with the organization of projects.
- Provide assistive technology such as voice-activated software.
- Allow extra time for tests and assignments.
- Provide extra help with problem areas.
- Ask the teacher to "check in" with your child each day to see how they are doing.
- Provide frequent rest breaks.
- Develop a modified learning plan.
- Provide special education.
Finally, you can help your child find a skill or interest that they are good at. For example, your child’s creativity may be the same or even greater. Focus on your child’s successes.
The emotional impact of learning problems
It can be hard on your child if they do develop cognitive or learning problems as a result of the tumour or treatment. Tasks that they once did routinely may become more difficult. They may see their classmates moving ahead of them at a faster pace.. Sometimes, if there are certain changes in the brain, your child may find it more difficult to regulate their emotions. They may become frustrated with homework and irritated with daily activities.
It can be helpful to talk to your child about these problems, to see what they feel and how you can help deal with any problems.
Some other ideas that may help your child are:
- Focus on your child’s other skills, talents, and interests. Provide opportunities for them to show their skills.
- Advocate for your child in school. Creating a supportive environment in school with their teacher and classmates will make it easier for your child. Ensuring that extra supports are available will help their learning.
- Emphasize your child’s personality. Rather than focusing on grades, praise your child when it’s appropriate for their actions and efforts.