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Most recently updated on April 10, 2013
Initially, you or your child will be making regularly scheduled visits to the neurosurgeon or other specialists to follow up on his or her progress. Professionals affiliated with support services may be monitoring you at home to provide help, but there are still other experts who may have to be consulted. The following people may continue to be part of the treatment team or may be added as needed.
One way that doctors monitor changes or lack of changes is to conduct magnetic resonance imaging (MRI) or computed tomography (CT) scans at scheduled intervals. Everyone wants to make sure that the treatment did what it was supposed to do and that the tumor is not growing back. If you have to cahnge treatment teams, have the previous team send the old scans to the new team.
Parents and survivors have referred to this time as "scanxiety". It is natural to feel scared or anxious around the time of new scans. The results may not always be clear cut. For example, it can be difficult or impossible to distinguish recurrent tumor from scar tissue. When doctors are in doubt, they will wait do another scan or seek other opinions. Newer, more accurate diagnostic imaging techniques (such as functional MRI [fMRI], single-photon emission tomography [SPECT], and positron emission tomography [PET] scans) are becoming available. Unclear reports do not necessarily mean disaster!
The question “What if . . .” may always be lurking. But even a child whose medical situation is stable will need to be monitored when treatment stops.
Either the tumor itself or the effects of surgery or treatments may cause impairments in the use of arms or legs, in coordination and gait, or in swallowing. Communication difficulties (language, speech, or understanding) may also occur. Some of these effects may be temporary, or other areas of the brain may take over that function. Professional therapy assists in helping the body regain as much function as possible. Physical, occupational, or speech therapists may help restore lost abilities. If necessary, these therapies can be part of a person's Individualized Education Plan. Children under 3 years old may benefit from an early intervention evaluation.
A physiatrist (rehabilitation doctor) can evaluate your child and make recommendations for a specific type of rehabilitation therapy. Physical therapists use motion and exercise to improve strength and movement. Occupational therapists evaluate and treat difficulties related to self-care and daily living. They can help develop new ways of doing things like getting dressed or eating, using special equipment if necessary. Children can have therapy as an outpatient, or occasionally a child will benefit from an inpatient intensive rehabilitation program. Therapy also can be delivered at home. The family may get involved in helping implement a rehabilitation program.
The pituitary, thyroid, and hypothalamus are glands in the brain that secrete hormones that control metabolism, growth, and sexual development. Sometimes treatment for a brain tumor can alter their function and lead to medical problems, such as diabetes insipidus, early or delayed puberty, and growth problems. A doctor who specializes in endocrinology will be able to monitor the possible effects of surgery, radiation therapy, or chemotherapy on these glands with blood tests and growth charts. Your child’s primary care physician typically will observe your child for normal growth and development. If there is a problem, your child can be referred to a specialist.
A neurologist is an expert in diagnosing and treating disorders and diseases of the brain and spinal cord. Deficits and changes in your child’s abilities or functioning can be identified, and new problems may be detected early. A pediatric neurologist typically checks reflexes, coordination, and the ability to perform fine motor skills, among other things. The findings of these tests will help assess the need for rehabilitative treatment and enable you to seek out other specialists, if needed.
Pediatric Neuro-oncologist or Oncologist
Pediatric neuro-oncologists and oncologists are pediatricians with specialized training in oncology or neuro-oncology (cancer as it relates to the brain and spine). They are uniquely trained to diagnose, treat, and monitor children with brain and spinal cord tumors. Often such an individual will coordinate your child’s care, discussing treatment options with neurosurgeons and radiation oncologists. They often work with Children’s Oncology Group (COG) institutions and thus have access to state-of-the-art therapies and national trials. (In most instances, a clinical trial will be available for your child’s disease. If not, your child’s oncologist is likely to plan therapy on the basis of findings from earlier clinical trials.)
As pediatricians, these physicians are attuned to normal childhood development and diseases. This background, along with extensive knowledge of cancer therapy, allows them to provide information about likely side effects of treatment (particularly as it relates to your child’s developmental status) and to guide you to other subspecialists as needed. A number of major pediatric institutions have long-term follow-up programs for cancer survivors. The pediatric oncologists who run these programs usually focus on screening and treating problems that may arise over the long run.
Treatment of a brain tumor in children may produce either short-term or long-term problems with learning and behavior. Because some problems become evident only as the child grows older, repeated neuropsychological testing (every other year) is essential to monitor progress and obtain appropriate assistance. Testing should be performed by a psychologist who is knowledgeable about pediatric brain tumors; a neuropsychologist will have additional training related to how diseases and treatments of the brain and central nervous system (CNS) affect psychological function.
If possible,you should have your child tested prior to beginning any chemotherapy or radiation therapy, to provide baseline. However since diagnosis and treatment occur quickly, this is not usually possible. two-thirds of brain tumor survivors will experience some cognitive change. These changes may be subtle, but can cause great frustation. Insurance companies and schools do not always understand the effects of a brain tumor and may need additional information in order to make the right decision.
Results of these tests will be useful in meeting educational needs and will provide the documentation necessary for the school to make the appropriate accomodations.The pediatric neuropsychologist will be able to help with school issues and can also be an advocate for your child.
Pediatric psychologists are trained to deal with the emotional and behavioral aspects of physical health. They can help with pain management, eating or sleeping problems, and social adjustment. For example, feelings such as grief and depression can often surface in a child who has a serious illness and should not necessarily be considered serious emotional problems. Misbehavior and even family difficulties can be normal reactions to the reality of the situation. These problems are common enough (during treatment and in the years that follow) that parents should take steps to lessen or prevent their effects. Many brain tumor survivors talk about having trouble relating to their peers. This is an area where a psychologist may be able to assist as well. It is best to seek out a psychologist familiar with brain tumor survivors.
Pediatric Oncology Nurse Practitioner/Specialist and Physician’s Assistant
Pediatric oncology nurse practitioners and physician’s assistants are highly trained health care team members who often work directly with your child’s doctor and can be a wonderful resource for you. Both nurse practitioners and physician’s assistants can help with medical procedures, including physical exams, under the supervision of a doctor. They often are the medical professionals who can simplify some of the medical jargon for you and coordinate the many tests and procedures your child will undergo.
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