WHEN MY SON WAS BORN I worried constantly about his health. He was born in France, a long way from family, and all my fears about his not being normal at birth were immediately transferred to his state of well being as a little guy.

My constant companion in my worried state was Dr. Benjamin Spock. No matter what the imaginary trouble, I could always find the symptoms in the index of Baby and Childcare, and be relieved to learn that he'd be better in no time.

I felt better. He got better. Someone who knew all the answers had generously shared them with me.

Mothers today worry instinctively too, but their worries are so much more specific and scary than mine ever were. From hyperactivity to cancer, fears about one's children's health are now so specific and terrifying that only a visit to the doctor can address the concern.

If the first doctor is not confident about the diagnosis, that visit can become multiple encounters with medical experts leaving parents and patients confused and with so little confidence that the mere process of finding the problem is terribly painful.

A young mother I admire greatly has two charming sons. The first was normal at birth, but was quickly diagnosed with "failure to thrive." He just didn't grow and weighed slightly over thirteen pounds at one year of age.

He was tested for every possible disease, but it was only when he had been in a National Institutes of Health study on growth hormones for over three years that an offer to the children in the placebo group helped identify his health problem.

Three years of study had proven the efficacy of growth hormones to the NIH researchers' satisfaction, so they offered growth hormones to the placebo group children. She had been certain that her son was a member of the placebo group, and was delighted that he should have this opportunity.

His age was a problem. At thirteen, he should, already have been in puberty, but, because of interminable tests, she knew his "bone age," the measurement taken of unusually small children to learn if their growth has stopped. His 'bone age' was much younger than his actual years.

Shortly before he began growth hormones, more blood tests were required. The first results were not normal. The next results were normal.

The decision was made to begin growth hormones, and watch his blood counts very closely. At this point, she began to think back. She pulled all his records, from birth to the present.

Although they were normal at birth, his white blood count descended regularly as he grew older.

"As soon as I charted these test results over time and showed it to his doctors, they made the diagnosis."

"We now know that he had Shwachman-Diamond disease all his life," she explained. "This potentially pre-cancerous condition is very rare, but he always had all the symptoms: pancreatic insufficiency, bone marrow failure and short stature.

"His pediatrician missed it and, although I was angry, I didn't switch doctors. As a nurse, I knew it was hard to catch."

Although she is a nurse, she believes her research about family health history, her intuition and her ability to chart his white blood counts to clearly illustrate the validity of her instincts contributed significantly to his diagnosis.

An accurate diagnosis is a critical component of treatment.

"We've always been very open with our sons about every step of this journey. We all know cancer could be on our horizon, and we know both boys have Shwachman-Diamond."

"Knowing what it is makes an enormous and positive difference. We're in touch with a few families whose children also have this rare disease. That helps. We still schedule more medical appointments into our weeks than most people will ever have to face, but with clarity of purpose.

"Doctors sometimes say our sons' conditions are just too complex for them....too much is going on to keep track .....so I help them organize their charts and design synopsis sheets for their files....making it easier for them to take good care of my boys, and, perhaps others.

It's easy to forget that doctors always thought of themselves as artists. The traditional art and practice of medicine left unending paperwork and research findings in the academic sector, not in the doctor's outer office.

Today, perhaps, that leaves a valuable role available for patients and their concerned families who now have amazing access to research, anecdotal experience and new findings. Analyzing this new knowledge might combine well with traditional worry to mitigate fear and create an unbeatable partnership between doctors, their patients, their families and their friends.

Doctors, of course, will have to learn to listen.