clock menu more-arrow no yes

Filed under:

Many childhood diseases are difficult to diagnose

Question: It isn't my intention to belittle the medical profession, but why is it that every doctor seems to attribute adverse behaviors to "psychological" problems?

My son was just diagnosed with celiac disease at age 20. He has suffered for years from chronic ailments — inability to sleep, ear infections, memory problems, diarrhea and/or constipation, asthma-like breathing difficulties, headaches, fatigue, irritability/tantrums.

Through the last 20 years we sought help from family practitioners and doctors in pediatrics, ENT (ear, nose and throat), ADHD (Attention Deficit Hyperactivity Disorder), allergies, asthma and psychology/psychiatry.

Can you tell me what we did wrong or what we could have done differently to aid in a timely diagnosis? — L.C., Richardson, Texas

Answer: Doctors are human, and sometimes they make mistakes. Pediatricians mostly treat healthy children and know that common, temporary symptoms often arise as a child faces predictable developmental challenges, or touchpoints.

They respect the power of development to help most children master short bouts of sleep problems, tantrums or other common childhood woes. Some of the problems that you mention — like headaches or ear infections — are common and can have a variety of benign causes.

Celiac disease, for example, affects the gut, yet the discomfort it causes sometimes leads to irritability, tantrums and hyperactivity in young children.

As a more extreme example, Wilson's disease, a rare disorder of copper metabolism that can lead to excess copper in the liver and brain, sometimes first looks more like schizophrenia or bipolar disorder.

Because one illness does not protect a child from having others, some of your child's problems may not always have been related to the celiac disease. This can lead to further confusion. When there is no immediate threat of serious deterioration, doctors may understandably prefer to watch and wait to spare a child the unnecessary diagnostic tests that are not always risk-free.

Often this is a wise approach but not always.

Some doctors may also be thrown off track by "behavioral" symptoms because these provoke emotional reactions in them — blame, pity, frustration, among others. Then, they may be more likely to look for behavioral explanations.

When a child's symptoms seem to be in the child's control, doctors are also more likely to assume that the cause is psychological, even though many serious diseases first announce themselves with just these kinds of clues.

To make things more complicated, the mind and the body are not separate: A number of diseases not only masquerade as psychiatric ones but can also be aggravated by psychological stress, trauma and anxiety. And many diseases traditionally thought of as "all in the head" turn out to have other causes, like infections, toxic substances in the environment and reactions of the immune system.

It sounds as if you are still blaming yourselves, as parents so often do, about what you might have done differently. Our advice to parents who are worried about their children's health:

1. Don't beat yourself up about what you think you did wrong (though, of course, you will). Save your energy and stay focused on what you can do right.

2. Trust your instinct. Parents know their children better than anyone, and they are usually right. If you're worried about your child's health, your child deserves a competent work-up.

3. Describe your child's problem, and how he seems unlike himself, as clearly as possible. Write down your concerns and your questions to discuss with the doctor.

4. When a child's symptoms get worse, fail to respond to treatment or don't improve as much as would be expected based on the child's diagnosis, it is time to re-evaluate the diagnosis and the treatment plan.

5. If your child has a rare condition, or symptoms that no one seems able to explain, it is critical to seek out a top-notch specialist, a physician in a teaching hospital who focuses on a small number of disorders with symptoms similar to your child's.

Whenever possible, stay in close communication with your child's pediatrician, but be relentless in seeking out a highly experienced expert — no matter how rare — who can make the diagnosis and tell you about all the latest research and treatment.

6. Do not let medical insurance stand in your way. Don't take no for an answer. Ask your pediatrician to help advocate for your child. Call and write your state's insurance commissioner and your representatives in Congress. Children should not be deprived of quality health care because of their parents' health coverage.

For more information on celiac disease, see the National Digestive Diseases Information Clearinghouse Web site at digestive.niddk.nih.gov/diseases

For more information on Wilson's disease, see the above Web site and the Wilson's Disase Association International's Web site at www.wilsonsdisease.org.


Questions or comments should be addressed to Dr. T. Berry Brazelton and Dr. Joshua Sparrow, care of The New York Times Syndication Sales Corp., 609 Greenwich St., 6th Floor, New York, N.Y. 10014-3610. Questions may also be sent by e-mail to: nytsyn-families@nytimes.com. Questions of general interest will be answered in this column. Drs. Brazelton and Sparrow regret that unpublished letters cannot be answered individually. Responses to questions are not intended to constitute or to take the place of medical or psychiatric evaluation, diagnosis or treatment. If you have a question about your child's health or well-being, consult your child's health-care provider. © 2005 T. Berry Brazelton, M.D., and Joshua Sparrow, M.D. Distributed by New York Times Special Features