Pediatric Low-Grade Glioma: Tips for Navigating School

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Every parent wants their child to do well at school, both academically and socially. But pediatric low-grade glioma (pLGG) can sometimes stand in the way of those goals. The side effects of treatment for these slow-growing brain or spinal cord tumors may affect the day’s learning and the way children and adolescents relate to their peers.

Some children may not experience many school-related issues due to pediatric low-grade glioma symptoms, but others can have side effects, depending on treatment and location, that can pose a problem, says Leo Wang, MD, PhD, a pediatric hematologist-oncologist and division chief of pediatric cell, gene, and transplantation therapies at City of Hope in Duarte, California. Factors such as seizures, low energy, and problems with learning, memory, mobility, and vision play a role, he adds.

Fortunately, although “There can be significant side effects associated with the therapy, pediatric low-grade glioma is largely a survivable disease,” says Dr. Wang. Having solid support in place as the school year begins can help your child stay engaged in class and feel less isolated from their friends. This framework “is absolutely critical. All children with pLGG should have the partnership of their schools to develop an appropriate learning program for them,” he says.

1. Inform School Staff

The first way to accommodate a school-age child with pediatric low-grade glioma is to be sure their teachers, aides, school nurses, and other administrators understand the nuances of the health condition. By educating the staff, “They can help keep track of symptoms if the child experiences fatigue, headaches, or seizures,” says Elias Sayour, MD, PhD, a pediatric hematologist-oncologist in the neurosurgery department at the University of Florida College of Medicine in Gainesville.

The information you share allows teachers to understand how they can help with different learning strategies, as well. For example, in emails to the teacher or via the school’s digital portal, convey your child’s health status, offer symptom updates, and explain sick days or absences due to medical appointments.

2. Explain pLGG to Classmates

Pediatric cancer is a bit scary, but when it’s discussed honestly and in an age-appropriate way, even kids are able to understand and empathize. Taking some time at the start of the school year to inform your child’s schoolmates about pediatric low-grade glioma can help prevent any stigma and promote kindness.

Explain pediatric low-grade glioma in a letter to be read by the teacher, or visit the class in person. Having your child along (if they want to participate) can encourage thoughtful discussion.

That said, not every child feels comfortable sharing their diagnosis. Let your child’s preferences guide the conversation, and remember that it’s okay to keep the discussion general or skip it altogether if sharing doesn’t feel right.

3. Obtain an IEP or 504 Plan

According to the National Brain Tumor Association, a child who has any type of pediatric brain tumor will likely require an IEP (individualized education program) or 504 (a similar specialized learning plan).

“Work with your oncology social worker and an educational specialist to navigate the complicated, state-specific rules and regulations around educational accommodations,” says Wang. “This includes how to get an IEP, which in-school and out-of-school resources are available to the student, and how best to access them.”

Many different accommodations can be outlined in an IEP or 504 plan, depending on the type of tumor and side effects that accompany treatment. “Some children may require more frequent breaks, help with visual or auditory processing, or additional time to complete tasks,” says Wang. Other accommodations can include visits to the nurse to take prescribed medications, use of the school’s elevator, and extra access to the bathroom, water, and snacks.

4. Allow for Physical Fun

Bonding with friends can happen in math class and the cafeteria, but it’s a lot more fun to engage with classmates at recess, on a sports team, and during outdoor activities.

Safety is always top of mind when it comes to physical exertion, especially for a child with pediatric low-grade glioma. “Stamina in sports may fluctuate and need special accommodations,” says Dr. Sayour. But nixing soccer or even backyard kickball isn’t necessary or even recommended.

In fact, one review that looked at injuries among children with brain tumors found that complications due to sports are not common among this group. Furthermore, these kids aren’t at a higher risk of injury. As a result, they shouldn’t be taken off the field or court simply due to their diagnosis.

5. Prep Your Child

You can’t be in the classroom advocating for your child each day, so encouraging them to speak up when they need help or an extra break can be an essential skill. Learning self-advocacy early is empowering, says Sayour, “and helps keep everyone on the same page.” It can also help ease the adjustment period when heading back to school.

Consider packing a list of phrases in your child’s backpack for them to refer to, especially if they’re shy about the condition.

6. Make a Backup Plan

It can be a challenge for a child to catch up on assignments and social events when they miss school. And since a child with pediatric low-grade glioma will invariably have doctor’s visits, therapy sessions, and other medical appointments to attend, it’s a good idea to create a backup plan for these absences.

Some schools may have the ability to record lessons to be watched later, and friends may offer to stop by with copies of missed worksheets. If your child can’t be present for group assignments, you might also speak with the teacher about obtaining an extension or makeup time for projects.

7. Encourage Social Activities

For a child with a chronic condition, making and keeping friends is nearly as important as keeping up with the learning portion of school. It can be tough to miss out on certain activities or be unable to participate in events because of side effects due to pediatric low-grade glioma treatment. To that end, encourage your child to stay in touch with their peers by arranging playdates or time to hang out. Depending on their interests, you could also sign them up for an art class, nature outing, sports team, or other fun event.

Can’t attend one week? Set up a FaceTime or Zoom to check in and catch up, says Sayour.

8. Consider Additional Emotional Support

Talking with a counselor or social worker can help your child adjust to their diagnosis and work through difficult emotions, such as feeling left out or different from their friends.

It’s also wise to consider talk therapy sessions, whether in a group or individually, for the whole family, says Wang.

“Therapy is a very important part of adjusting to life with pLGG — not just for the child but also for their siblings and parents. Your oncology team should be able to put you in touch with age- and stage-appropriate psychological counselors,” he says.

“A brain tumor creates many psychosocial challenges that must be navigated in order to provide optimum care,” says Sayour. “A school counselor or therapist may be critical in this regard.”