Neuropsychological Testing and Pediatric Proton Therapy

I am a lucky person in serving in my role as the Executive Director of the Pediatric Proton Foundation because I get to interact with health care professionals and convey to you what’s on their minds.  Recently, I visited Philadelphia and Indiana and sat with the Neuropsychological teams at both centers.  Here is what I learned that you need to know:

1.  If your child has been diagnosed with cancer and is well enough, you should get a complete neuropsychological test to establish a baseline as soon as possible.  Neuropsychological testing involves giving a child a number of tests that provide information about how the brain works in the areas of memory, speed, language, visual processing, auditory processing, integration of information, emotional and behavioral regulation, and planning and organization.  The tests are age appropriate. These tests are administered by a trained professional usually a licensed psychologist and should be done by your doctor, not your school.

2.  The typical neuropsychological problems exhibited by childhood-cancer survivors involve processing speed, memory, working memory, organizational skills, time management skills, math skills, and social skills. These deficits have clear implications for success in the educational environment.

3.  All cancer treatments including chemotherapy and proton therapy can cause late effects to include cognitive deficits.  This is still a very new area in terms of understanding what specific chemo drugs cause problems because most chemo protocols are a mixture of various drugs.  However, it is well-documented regarding the late effects of radiation to the brain and spinal cord and other organs.

4.  Knowing the late effects will not probably not change the protocol that you need to follow for your child; however, testing helps establish what effects may be associated with cancer treatment as compared to other normal causes.

5.  Many late effects take years to really show in academics because earlier studies are easier to process as compared to more difficult tasks later in middle school and high school.

6.  Recommendations from the neuropsychological examination may include specific professional interventions that can be incorporated into a child’s Individualized Education Program (IEP).

7.  All the professionals I met with recommended annual testing.  Many insurers will only pay for it every three years.  Read your healthcare handbook and know your rights.