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.

Doctor Number Four

I was dreading the trip to Doctor Number Four, a neuro-ophthalmalogist in Winter Park. Her office - in a mid-rise, older office building, was small and crammed with all kinds of artwork. Her efficient receptionist fixed me a cup of hazelnut coffee from one of those machines that makes it a cup at a time.

The night before, I had Googled "optic nerve atrophy in teen males" and up popped a disease I had never heard of : Leber's Hereditary Optic Neuropathy. I scanned the article, and what I retained was "rare," "permanent blindness," "no cure." Stuff like that. Enough to convince me that I did not want Tanner to have that. And how could he? It was rare and genetic: nobody in my family had such a thing.

I didn't like the doctor. When I went to take notes on what she was saying, she held out her hand and said she would prefer that I listen to her. She said she was going to order an MRI - to rule out tumors and lesions, and then, if that were negative, she would order a spinal tap to rule out multiple sclerosis. But really, she said, she suspected something else. "What, LHON?" I asked. 

The doc asked me how I could possibly know about that and I introduced her to Google. Seriously? Don't all people Google their symptoms? 

I then called my mom and told her about the difficulties Tanner had been having, being careful to say vision problems instead of blindness. I broke down on the phone anyway. 

And of course, after the appointment, Tanner and I went to lunch. 

Doctor Number Three

During any crisis situation, I believe most people are able to tap into reserves that allow them to continue functioning at a certain level. Well, that's what I used to believe. The truth is, you have to dig deep for understanding and acceptance and the will to go on.

At Tanner's next doctor, a retina specialist named Elias Mavrofridas (Dr. Mav, for short), we went through the same routine of the past two days. There were several new tests added, including one that required the administering of an IV medicine, to facilitate an imaging device that would take pictures of his retina and optic nerve.

Dr. Mav showed me a picture of Tanner's right optic nerve, and he said that he believed this was the culprit. He explained how the optic nerve appeared atrophied, and that meant that Tanner's blindness had happened a while ago. He said that teens are good at compensating, and that even though Tanner noticed it just a few days ago, it was not a new problem.

He said that even if Tanner had noticed it when it first happened, that there was nothing that could have been done to help it. Now, we had to go to the fourth doctor, a neuro-ophthalmalogist. It hit me then. Tanner was blind in his right eye. Three doctors didn't know why. What was wrong with my baby? I began to cry, in great, gasping sobs.

Dr. Mav tried to console me. Look, he said. I see patients all the time who are going totally blind, at least he still has sight in his left eye.

"Doctor," I said. "I understand that you are trying to give me a glass -half full approach to this. But this is MY glass."

At the time, I thought I was clever. Now I realize that he didn't know what to do with a crying woman.

On to the second doctor

The next day following the emergency room visit came pretty darn early. I had to wake Tanner up, and that was scary. Irrationally scary, I should say. What if the doctors had missed something the night before, and he had a massive intra-cranial hemmorhage that had now killed him?

But no, it was still the same sleepy Tanner that had always been notoriously hard to awaken. "Is there any change? Can you see any better/worse? How do you feel?" The words were barely out of my mouth when I tried to stop myself. Full panic mode had not set in yet; we were seeing another doctor who would give us a diagnosis/treatment/medicine - something. Right?

Kevin Barber, MD, in DeLand, seemed competent enough to examine my son. The apparati he used to perform a series of tests on my son were appropriately high-tech enough. I knew something was dreadfully wrong, however, when he used a low, professional sounding voice to describe a finding to his technician. Whatever it was - and I can't remember it now - it didn't sound good.

"Well," Dr. Barber said, "It's not a detached retina." But, he added, he did not know what it was. He said he was referring Tanner to a physician in Lake Mary who was "the smartest person" he knew. 

Tanner did not seem concerned with his eyesight. He was more concerned with answering his text messages. I, on the other hand, was growing increasingly worried. What was wrong? Why was Tanner going blind?

Tanner: The Early Years

Tanner was born a scant 18 months after his brother Casey, and we barely had time to wrap our minds around the idea of another baby. The pregnancy, like my other two, was non-eventful.

Tanner came barreling into the world at nearly ten pounds. He was perfect in every way. He was a good eater, and he loved to be held, curling his chubby arm around a nearby neck.

He did have a couple of strange, if non-life-threatening medical issues. Shortly after he was born, he developed a hydrocele in his testicles. This caused them to swell to 4-5 times their normal size. Not to worry, said the doc. The swelling will go down soon.

He also had a tear duct that would clog regularly, and this would cause his eye to swell shut. Warm compresses helped him, but I began to doubt my ability to care for my small charge.

Tanner also acquired something we would call the "Unicorn." As he was learning to walk, he would occasionally stumble and hit his head in the middle of his forehead. For several months, it was a perma-bump.

When he was about 2, his pediatrician told me he was concerned about Tanner's delayed speech development. This could be caused, in part, by Tanner's older siblings doing the talking for him. "Tanner wants some juice," was a refrain we heard from Casey many times.

Soon, however, Tanner was talking up a storm. Video from a trip to the beach shows a loquacious Tanner asking questions, barking directives. "Mommy, where does the ocean come from? Mommy, could you please hurry and open my Slim Jim?"

Tanner was always hungry. We kidded that he was like the puppy in 101 Dalmatians that says, "I'm hungry, Mother. I really am."

One time, I was having a nice moment with Tanner. He was sitting next to me, and we were chatting - rather, Tanner was chatting - and he looked up at me and said, "Do you know you have a vampire tooth?"

Apparently, teeth had a special fascination for Tanner at that age, because shortly after the vampire tooth episode, we were in line at a store. A man was behind us, talking about something to someone. Blah Blah. I didn't realize that Tanner was observing him. "Mommy," Tanner said. "That man's missing a tooth!"

Perhaps my most favorite Tanner-ism, however, is one day, when I was taking a nap, I asked Tanner if he wanted to cuddle with me for a minute. He said sure, and climbed up into bed with me. After a bit, he said, "Has it been a midnit yet?"  I said yes, and he got down out of bed.

The long wait

When the triage nurse finally called us back, she asked the question that was repeated a million times over the next few months. "What brings you here today?"

Yes, I understand the need for repetition. Histories must be taken over and over again so each caregiver can be alert for anything that might have been left out.

Here's how Tanner's history usually went: On May 24, Tanner came home from cross-country practice ("and weight-lifting, Mom. Don't forget I was bench-pressing"), and said his vision was blurry in his right eye. He covered his eye with his hand, testing it out, and it was still blurry.

See any stars? Any headaches? Those were the top two questions. Dizzy? No, no, and no.

Tanner was taken back to get a CT scan. I didn't go with him, just sat looking at the zig-zagged television screen. Apparently Tanner's eyes weren't the only thing not working.

There were two nurses sitting outside our glass-walled room. I became acutely aware of what they were saying: " ... detached retina ... surgery ..." I stuck my head outside. "You think it might be a detached retina?" This actually brought me some relief. There was a diagnosis. I had heard about detached retinas, I knew they could be repaired, somehow. Tanner would be OK.

No, the nurses said. They were just talking about possible causes. They wouldn't make a diagnosis.That was the doctor's job.

When Tanner came back, all he wanted to do was sleep. It was after midnight by then. I figured he wouldn't be going to school, but I didn't know what our next step was.

The doctor came back into the room. She had the results back from the CT scan. No sign of a bleed, but she did not have a diagnosis. She suspected a detached retina, but referred us to a local ophthalmalogist. This was an urgent situation, but not an emergent one, she said. Tanner would not have to be admitted to the hospital.

On the way home, Tanner was hungry. I bought him Taco Bell.