Bone of Contention

Of course, she spent a lot of time with him: Sessions usually lasted over an hour. And two weeks after his sixth treatment, Gideon was able to say that both areas of pain were gone. It was fitting that he could make this official announcement on Memorial Day, May 31. That date marked exactly 2 1/2 years since the beginning of his symptoms.

Back to the Bone

While we can't say with absolute certainty what caused this lymphatic problem, the timing of its onset strongly suggests a connection with the fish bone incident.

Jay Greenberg, the oncologist we consulted, had provided a final clue during our visit with him when he mentioned that infections or other immune reactions can sometimes be triggered by a child's swallowing a foreign object and sustaining an injury from it. The infection can run its course but leave the lymph nodes inflamed and swollen.

If Gideon's treatments from Wood had not been effective, a biopsy of one of his lymph nodes would have been the next logical step and might have provided further information about what exactly caused the swelling.

An obvious question arises: Since Gideon's ailment was not especially unusual, why did none of the five otolaryngologists we consulted mention this possibility? Beats me.

The word that best describes this whole process that we went through in dealing with Gideon's problems is waste: the waste of time spent in useless doctor's visits and procedures, the waste of money spent by us and by our insurance companies and, most important, the waste of a child's needless suffering.

I felt, most of the time, as if my husband and I were completely on our own in trying to figure out what was wrong. Until we discovered Steinmetz, there was no one in charge of Gideon's overall treatment: just us, bumbling our way from one doctor to another.

I began to feel after a while as if Gideon and I were on trial whenever we went in to see someone new. How should I present his symptoms? How much should I tell? How could I be sure that this doctor would take us seriously and not dismiss me as hysterical and Gideon as manipulative or psychologically troubled?

I remember during one appointment hoping the doctor wouldn't notice that I had put on my navy blue pants instead of my black ones and therefore my outfit didn't match. If I couldn't even put my clothes together properly, how could I possibly be a valid witness about my child's symptoms? That's how paranoid I became.

Well, Gideon is fine now. He is what he always was: a bright, normal, active, happy child. He's not harboring some deep, dark secret that his father and I know nothing about but is horrible enough to keep him in pain for more than two years. He's not a malicious little imp putting one over on us and his doctors just so he can have the joy of shots, medications and long stretches in waiting rooms.

His problem was, in the end, simple to fix. We were fortunate. Gideon's condition wasn't progressive or life-threatening, and he doesn't seem to have any lasting effects from it. We have good medical insurance and so didn't have to deplete our savings to pay for all these treatments.

But it shouldn't have had to be this way. It's tempting for me to just blame myself for not asking the right questions or noticing the right things, and I'm sure that there would be some justification for that. But it would have been nice if we could have found a doctor sooner who was, in my husband's words, "willing to do doctoring." If the problem couldn't be solved within a 10-minute appointment, most doctors we consulted seemed to have little interest in pursuing the matter.

Is this attitude the fault of our health care system, or our medical schools, or what? I don't know. Of course, it's likely that none of this would have happened if I'd done what I should have done in the first place. Which leads to one last lesson from all this: Always take the bones out of the salmon.

Deborah Simons is a writer living in Falls Church.