Should You Test?

by Kelly Dorfman, MS

Medical testing has changed dramatically over the last few years, despite our attempts to cling to the illusions of the past. The familiar family doctor, who knew which test to order, to evaluate every possible problem, is long gone. Today, often a harried stranger is trying to serve too many patients while being relentlessly pressured by laboratories, insurance companies and pharmaceutical firms to run tests, prescribe drugs, and save money, all at the same time.

For the families of children with developmental delays, seeking medical care is more complex because there is no standard protocol for such a diverse population. The tests sold to insurance companies - and therefore to you through your doctor because they are reimbursable - are useful for only a small percentage of the developmentally delayed population. For instance, Magnetic Resonance Imaging (MRI), Electroencephalography (EEG) and genetic testing will identify lesions, seizures, and the severest of genetic imbalances. Many children who do not have these markers are tested for them anyway, just for the sake of "doing something."

Many months and dollars later, anxious parents are often told their child is medically normal, when the child seems anything but. As one father recently expressed it, "I am completely depressed." With the number of youngsters with delays increasing, new and fascinating tests, covering a broad range of theories and possibilities, are becoming available. These tools may explain the elusive nature of the metabolic imbalances affecting children with delays. . . but how is a parent to decide which test to try?

Start by asking five basic questions:

1. Will the results help diagnose the problem or define a treatment plan? Ask why a test is being suggested and how the results will be used to prescribe treatment. Screening for gluten/casein sensitivity, for example, is a good choice if parents cannot decide if they want to try a restrictive diet. Strong positive results encourage reluctant family members to support such an effort.

2. If the results show an imbalance is a course of action available and am I willing to consider it? Because PDD and autism often have an immunological component, detailed immune system testing has become fashionable. The therapies available to treat severe imbalances or immunization damage can be controversial, expensive and difficult to access. Before testing, explore your treatment options. If you cannot or will not pursue the available remedies (such as gamma globulin infusions), consider whether the results can help you avoid further problems, such as those that may be caused by upcoming immunizations. If the results will neither lead to a metabolic therapy nor prevent future trouble, the funds may be better used for treatment such as occupational, play or vision therapy.

3. Is the test being recommended addressing the individual needs of my child? Some doctors run a standard battery of tests for every patient. It is not unusual to be charged several thousand dollars to "screen" a child with delays. The resultant mass of data is rarely worth the emotional trauma and expense. Think twice before buying a pre-made package that may contain a lot offsets which may be superfluous and go un-interpreted. Better to hand-pick a few tests directly indicated for your child and to work with the results, one at a time.

4. Who will interpret the test? Before convincing your physician to run tests with which he/she is unfamiliar, arrange for proper interpretation. Just because you have spent money on a test does not mean that your physician will suddenly become interested in the results and make the necessary effort to learn about them. Many physicians blatantly refuse to inquire about tests that, they remind patients, they never wished to do.

5. If the test is new or unusual will someone be available at the laboratory to answer questions? All laboratories will speak to doctors because they are the direct customer. Few labs will speak to patients, because providing staff to answer questions costs money, and because of liability concerns. Furthermore, the laboratory does not know the testee, while presumably the doctor does, and should not interpret a test out of context. Many labs use this excuse to answer no questions whatsoever. You are dependent on your physician‘s willingness to make calls and ask the questions you want. Call the laboratory first and find out how hard it is to get information.

[Initially published in New Developments: Volume 3, Number 4 - Spring, 1998]

All material in this web site is given for information purposes only and is not to be substituted for advice from your health care provider.


5801 Beacon Street, Pittsburgh, PA 15217 | P: 800.497.0944 | F: 412.422.1374

Page last modified: February 23, 2009
©2009 Developmental Delay Resources. All rights reserved.