Chasing a Diagnosis: Spinal Bifida

It took much too long to get a diagnosis for my daughter. In the end we had a diagnosis but it was too late to be of any significant help for her.

My daughter suffered from leg and back pain since she was fairly young. These were described as numbness and tingling in her legs. No one could find a reason for this. Do doctors just not want to admit when they have exhausted possible diagnoses? I have more respect for a doctor when he can do just this. It saves valuable time.

Initially, she was treated for flat feet by three different orthopedists (at different times). We were given a prescription for orthopedic shoes and given the names of two shoe stores where we could find the shoes. These were some of the ugliest shoes you can imagine and my daughter hated them. Perhaps that fact obscured what was really happening. In my case, seeing flat feet made me believe what these doctors were saying. after all, I could see it with my own two eyes.

The orthopedic shoes did seem to be of benefit for a year or so. When she started complaining of pain again, the doctor put her in a hard, plaster cast for six weeks. This process was repeated two or three times. She had to stay on crutches, each time, for the six weeks and then another two weeks until her leg muscles were built back up. She became amazing on crutches and learned to keep up with her friends.

Eventually we were referred to a pediatric orthopedist, at a hospital 50 miles away. He was convinced that putting inserts into her shoes would fix the problem. Inserts were added into her shoes. These inserts were made especially for her and were hard plastic. We spent the next few weeks, going back and forth, between home and the children's hospital for fittings, before the inserts were finally in her shoes. We saw this orthopedist on and off for two years. This was a 50-mile trip and required that she be taken out of school, as I was taken out of work.