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Nancy's post to ped-onc on cognitive effects/IEPs
A post that Nancy Keene used to periodically post to the lists on cognitive late effects and IEPs.
"I'm copying something I sent earlier this year since there are a lot of education questions popping up. I'll plug in the names of a few of the primary researchers in this area should you need to get articles. The kids most at risk for problems are children treated before the age of 5 and those on high-risk protocols. Any kid who was irradiated should be tested, in my opinion. But, older kids on average risk protocols might not need testing. You'd have to decide on an individual basis.
Young kids who received high dose MTX and/or IT MTX can develop subtle learning disabilities. (Most young children who have brain radiation develop disabilities.) This is well documented in the scientific literature. The most common problems are with handwriting, spelling, reading or reading comprehension, understanding math concepts, attention deficits (tend to drift off and are easily distracted), short term memory and information retrieval, planning and organizational skills, social maturity and social skills.
Here are the basic steps to start the IEP (individual education plan) process:
- Find out if the hospital that treated your child has an educational liaison and talk to him/her. Ask if she/he will come to the IEP meeting.
- Write the principal and say you want your child referred for special education testing.
- Ask your child's oncologist to write a letter to the principal saying your child is "health impaired" due to her history of cancer.
- The school will do basic testing and often find this that the child is not far enough behind to warrant help (two grade levels). You can then have your own testing done. I recommending using the private testing rather than the schools since it is more comprehensive, outlines the areas of concern with greater precision, and usually includes a long list of recommendations.
- Check to see if your insurance will pay for neuropsychological testing. These are late effects of treatment and should be covered as such. Here's what I wrote earlier this year about the testing:
Neuropsych exams are done by PhD neuropsychologists. They are usually 2-3 hours per day for two days. All of that time is spent with the child, and the parents are interviewed separately. Most good ped neuropsychs are great with children. They give them a series of general tests appropriate for age level, then another series of more and more specific subtests based on the results of the general ones. There are drawing tests, putting pegs in a peg board, using both hands to press a clicking device, putting together puzzles, remembering series of numbers and words, etc. They make it fun.
You should get a report that describes each test, your child's performance, and specific recommendations for schooling. Explain to your child ahead of time that the tester will ask him to do some fun things and some drawings. Some of the stuff will be easy and some things he won't be able to do. But to just do his best.
In contrast, educational testing through the schools can range from basic skills tests to see if your child is at grade level to comprehensive neuropsych testing done by a psychologist. So, it may or may not meet your needs.
I don't usually talk about my book on the list, but "Childhood Cancer Survivors" does have a lengthy section on schooling. So, get the following from your library or ask that they order them through interlibrary loan: "Childhood Cancer Survivors" and "Navigating the Special Education Maze" By Winifred Anderson.
If you run into major problems with the school that you can't resolve, I'd recommend contacting the Childhood Cancer Ombudsman Service: FAX at (804) 580-2502, or contact at firstname.lastname@example.org. It's no longer affiliated with Candlelighters--is run by Grace Monaco and her very competent friends.
That should get you started. I know lots of adult survivors with these disabilities who are did great academically after their disabilities were identified and addressed. One just graduated from Colgate and is working on Wall Street and one is in law school. So, its a pain to work with the school and insist that your child get what she is legally entitled to, but its well worth the effort.
PS. Candlelighters will send you a book for free called "educating the child with cancer" 1-800-366-CCCF"
by Nancy Keene
Bibliography: Neurocognitive Late Effects
The following is a four-page scanned document that summarizes journal articles on neurocognitive late effects (9/2000):
The following are not included in the above bibliography:
Brown RT, et al. "A 3-year follow-up of the intellectual and academic functioning of children receiving central nervous system prophylactic chemotherapy for leukemia."
J Dev Behav Pediatr. 1996 Dec;17(6):392-8.
Mulhern RK, et al. "Neuropsychological status of children treated for brain tumors: a critical review and integrative analysis."
Med Pediatr Oncol. 1992;20(3):181-91. Review.
Mulhern RK, et al. "A prospective comparison of neuropsychologic performance of children surviving leukemia who received 18-Gy, 24-Gy, or no cranial irradiation."
Ochs J, et al. "Comparison of neuropsychologic functioning and clinical indicators of neurotoxicity in long-term survivors of childhood leukemia given cranial radiation or parenteral methotrexate: a prospective study."
J Clin Oncol. 1991 Jan;9(1):145-51.
You can also go on PUB-MED, go to one of the above articles, and click on "related articles" you will find dozens of citations.
These pages are intended for informational purposes only and are not intended to render medical advice. The information provided on Ped Onc Resource Center should not be used for diagnosing or treating a health problem or a disease. It is not a substitute for professional care. If you suspect your child has a health problem, you should consult your health care provider.