The treatments we provide help many children successfully recover from brain tumors. But children often experience lasting mental, physical and emotional symptoms long after finishing treatment.

Siteman Kids at St. Louis Children’s Hospital offers ongoing screening and assessment through after care and the Late Effects Program. We connect patients with the specialty care and community resources they need.

In some cases, children benefit from consultations with physicians from other medical specialties, including endocrinology and dermatology. Your child’s oncologists will be able to recognize when additional help is called for and will provide referrals to other Washington University physicians as needed.

After Brain Tumor Surgery

Recovering from brain surgery can be a long process for children. Patients may have problems with learning, vision, hearing, motor skills or other issues.

We continue to care for and support pediatric brain tumor patients well after they complete standard treatment.

Neuro-oncology survivorship

We follow patients for as long as they need us — often for 10 years or more. We consider all aspects of a child’s recovery.

Our services include:

  • Regular medical evaluations and brain imaging
  • Cognitive and learning assessments 
  • Evaluations by a psychologist experienced in the stresses of cancer survivorship
  • Pastoral care support

Brain tumor rehabilitation

Brain tumor treatment can impact a child’s developmental progress and quality of life. Rehab can help and is an important part of after care services for many children.

Our brain tumor rehab services include:

  • Speech therapy
  • Occupational therapy
  • Physical therapy 

Patients may be referred to Therapy Services at St. Louis Children’s Hospital or a Washington University pediatric rehabilitation medicine specialist or both, depending on their symptoms.

Pediatric rehabilitation medicine specialists provide expert care for children as they adapt to life after surgery and treatment. The Washington University specialists are experienced at managing pain and abnormal muscle tone. They also advocate for children and families who need additional equipment, therapy, and nursing services. Patients may meet with pediatric rehabilitation medicine specialists in both inpatient and outpatient settings at SLCH.

Additional medical specialists

Pediatric brain tumors often require complex, multi-faceted treatment plans that extend beyond the immediate expertise of the oncology team. The Pediatric Brain Tumor Program at St. Louis Children’s Hospital connects patients and their families with exceptional physicians from other specialties to ensure that their needs are fully met.

Neurologists & NF Clinic

In collaboration with the Division of Pediatric and Developmental Neurology, our pediatric neurologists manage the neurologic complications of childhood brain tumors, which can include headaches, sleep problems, weakness, speech impairment, and seizures.

If your child’s brain tumor is caused by the disorders Neurofibromatosis Type 1 or Type 2 (NF1 and NF2), they will receive specialized neurologic care in collaboration with the Washington University Neurofibromatosis (NF) Center.

Endocrinologists

Sometimes, brain tumors can impact the pituitary gland. The pituitary gland is a “master gland” in the brain that makes hormones, or chemical messengers that tell the body what to do. When the pituitary gland is compromised, the body’s balance of hormones is thrown off. This can cause a number of conditions and illnesses.

Pediatric endocrinologists evaluate and treat brain tumor patients at high risk for developing disorders related to pituitary malfunction, including disorders of growth and puberty, adrenal gland disorders, or thyroid issues. They are experienced in monitoring and replacing hormones, and can provide your child with a number of options to help them feel better.

Dermatologists

Pediatric dermatology works with neuro-oncology patients to manage skin side effects of cancer treatment, including rashes, hair loss, and skin infections. They also help with screening for late effects of treatment, such as skin cancer and moles.

In recent years, it has become clear that neuro-oncology patients are at higher risk for skin concerns. The pediatric dermatologists at St. Louis Children’s Hospital collaborate with our program on research to improve care and patient education.

  • Team members: Dr. Carrie C. Coughlin and Katie Schultz, RN

Psychologists

At St. Louis Children’s Hospital, we recognize that brain tumors take a psychological as well as a physical toll. We have a pediatric psychologist on staff who provides assessment and intervention to pediatric patients with brain or other central nervous system tumors and their families.

Psychology services can help patients adjust to diagnosis and treatment, improve their emotional and behavioral well-being, reduce anxiety, improve sleep, and manage somatic symptoms such as pain and nausea via non-pharmacological strategies. It can also address survivorship needs, including concerns with executive functioning, learning, independent life skills, and social relationships.

Neuropsychologists

Neuropsychological testing is available to assess cognitive functioning, learning, memory, executive functioning, and adaptive functioning. Recommendations made based on testing results can be utilized to develop school-based plans (e.g., Individualized Education Plans (IEPs), Section 504 Plans) to meet learning and behavioral needs in the classroom and to help families support patients at home as well.

Late effects program

We follow patients as long as they need brain imaging, often two or more years after completing treatment. Once imaging is no longer needed, patients can transition to monitoring at our Childhood Cancer Survivorship Program. 

Support Services for Patients and Families

Our support services help children navigate school and life during and after treatment — and into adulthood.

Brain Tumor Education and Therapy Support Group (BEAT)

BEAT offers education and emotional support for parents and caregivers, and gives children a chance to enjoy fun activities like watching a movie or going to the zoo. This program is available to all pediatric brain or spinal cord tumor patients and their families throughout the region, regardless of where the child is receiving medical care.

Lunch is provided. A social worker and nurse always attend with the children. For more information and a schedule, call 314.454.2546.

Help with school

We partner with parents and schools to help children make progress in school during and after treatment. While children are in the hospital, we offer in-room tutoring so they can keep up with their schoolwork. Our dedicated school liaison and child life specialists collaborate with teachers and school administrators to make sure children have the support they need at school.

Care for young adults

Young adult survivors often need care and support after they reach the age of 21. Our Lifelong Outcomes Clinic at Siteman Cancer Center cares for these patients. For more information, call 314.747.1171.

Contact the Brain Tumor and Neuro-Oncology Program

Please call 800.678.5437 to make an appointment or request an appointment online.