Doctor Number Four, part Two

High anxiety for the next few weeks. Tanner received an MRI, and then we had to wait a few days for the radiologist's report. They were looking for a tumor around his optic nerve; if a tumor grew there, they said, it would clamp off the optic nerve, causing his blindness. They were also looking for signs of multiple sclerosis, which would have appeared on the MRI as lesions.

Pretty heady stuff, no pun intended. The waiting was excruciating for me, but Tanner didn't seem too bothered by it. We got the results just before the weekend, from the Doctor's assistant. Everything was negative. What now?

Well, the doctor still wanted to rule out any demyelinating disease like MS, so she ordered a spinal tap. Tanner was not very happy about that - he didn't want anybody injecting his spine.

After talking with my brother Damian, an anesthesiologist, Tanner seemed to feel a little better about the procedure. He was taking everything like a champ.

And the spinal tap was uneventful. They whisked him away, and then 30 minutes later he was back. And hungry.

So I fed him, took him home, and we waited for the results. Negative. His neuro-ophth wanted Tanner to have the genetic testing for Leber's Hereditary Optic Neuropathy. I went through the process of submitting the forms, but our insurance does not do genetic testing for non=cancer-related diseases.

I did some online sleuthing, and found a not-for-profit genetic testing lab in Iowa that did the test for $100 v. $1,500. It would require some administrative work on the part of the prescribing physician, but the results would be the same.

This lab does thousands, maybe even hundreds of thousands of these tests each year. They have it down to --you should pardon the expression--a science.

After giving my the runaround for several days, the neuro-ophth's assistant called me one day and told me that Dr. Sedwick would not, repeat NOT complete the online form necessary for Tanner to receive the genetic testing. She was concerned about giving her email address out, blah blah blah.

"So what you're telling me, then," I fumed, "is that Dr. Sedwick does not wish to be an advocate for my child?"

I had misplaced anger, and there was no where for it to go. What a freakin' hypocrite of a medical professional. All along, she had been telling us that Tanner likely had this rare genetic disorder, but she would not help us by ordering the test from a not-for-profit lab. I still get mad when I think about it.