If you missed Part 1, go find it here. We’ll wait.
When our 15-year-old wild man broke his foot jumping down the stairs, I saw it as anything but the answer to prayer. I looked at his instantly swollen foot and just felt tired. Two years to the day since his sister’s leg issues had begun, and here was another child hobbling around the house.
I sent a picture and a text message to our family doctor. (The plus side of having a medically interesting child it that I have most of our family doctors’ cell phone numbers, and they’re okay with Sunday night texts. Thank goodness.) He texted back a laughing emoji and said “One guess….Lincoln? You can bring him in in the morning, or you can save yourself some time and take him to a podiatrist.”
I called and texted a few friends, and they were unanimous in their praises for a guy right here in town. “Dr B is amazing,” more than one said, so I looked him up, saved his number, and called for an appointment first thing in the morning.
As we sat in the waiting room that Monday morning waiting for his appointment, a guy in scrubs with a goofy grin and a thick Texas twang spoke quietly to the receptionist, and then waved at us through the window “Hey, y’all!” he exclaimed in an accent that reminded me a bit of Gomer Pile. My eyebrows shot up and my son whispered, “That’s not the doctor, is it?”
His drawl might have thrown us, but he was fast and efficient, taking a history and x-rays within minutes of calling us back. His foot was definitely broken, but just needed a boot. As he talked to my son and was finishing up this last appointment before lunch, a voice in my head kept saying, “He’s a foot doctor and her feet don’t work.”
“He’s a podiatrist,” I answered myself inside my head. “I’m not burning my one shot with a podiatrist – flat feet and ingrown toenails are not paraplegia.” But the thought kept nagging at me.
As I shook his hand and got ready to leave the words, “Do you have a moment? I have this medical mystery child, and I wonder if you have an idea….” tumbled out of my mouth.
He looked immediately intrigued and began asking questions. I showed him a photograph of her at the skate park, and he laughed at her daring. Dr B invited us to walk back to his tiny office where he began taking notes and asking detailed questions about how it had all progressed. I showed him a photo of her foot drop and then her non-wrinkling toes, and he nodded.
“I think I know what this is,” he said. “Send me her files and I’ll go through them, but I have a pretty good idea what’s wrong with her.”
All of them? I asked. There is a stack of files on her inches thick, and they all say “Conversion.” He nodded. “It’s not Conversion,” he said. “That’s the one thing I’m certain of. Let me read through it all, and then I’ll get back to you.”
So I called our family doctor and had the stack sent over. And I worried and prayed, and tried not to hope.
Nine days later I got an email that simply said “I know what this is. Bring her in.”
Ella and I stopped in front of his office building the next morning and sighed at the same time. “I hope he really knows,” I told her. She silently shrugged her shoulders and then pushed her way into the building with more resolve than I felt.
When it was time for our appointment, the doctor bounded towards us with his usual over-the-top enthusiasm. “I’m so glad y’all are here!” He exclaimed with an aw-shucks grin and good ol’ boy demeanor. Ella heard that drawl for the first time and shot me a “you can’t be serious” look.
No sooner had she seated herself on the exam table than he whipped the shoes off her feet. He took one look at the curl of her feet and said, “I knew it!!”
He didn’t explain what he knew, but told her to hop back in her chair and follow him. They were gone before I knew it, his voice trailing after him. “Before I tell you what’s wrong, let me show you what isn’t. Let’s do away with Conversion once and for all.”
Within minutes he had taken x-rays of both of her feet and legs. It was at that moment that I realized 18 doctors and no one had ever taken a picture of her feet. What he showed me on those x-rays was the result of two years of no muscles pulling on her bones at all. They had become hollow and brittle, like a bird’s. They were uniformly atrophied, he explained, which showed that the muscles weren’t moving anywhere.
Her thighs were a different story. He playfully covered the x-ray with his hand and asked “Where does the paralysis begin?” I answered immediately “An inch and a half above her knees.”
He moved his hand away from the screen, and saw medical proof of the Line of Demarcation that had been ignored by so many medical professionals. There was a line across her bone more or less an inch and a half above her knee. Below the line was atrophied bone, above it the bone was healthy.
I stood there and stared. An effing x-ray. All the nerve testing and MRIs we had fought for and fought over, and here was proof in a simple x-ray. Undeniable proof.
We went back in the exam room and he held her curled feet in his hands.
“She has Guillain-Barre,” he said simply. “It has a distinct foot drop. Once you’ve seen it, you know it. Plus she follows the disease pattern almost exactly.”
“But it went backwards….” I said in confusion. “It went backwards and that’s why no one could diagnose it.”
“Yeah,” Dr B said. “To be specific, she has a form called Acute Motor Axonal Neuropathy. It does go backwards, knees down instead of toes up, sometimes. Do you know who gets Acute Motor Axonal Neuropathy? Little girls in rural China……and your daughter. It’s the kind that usually only affects little girls. There are only about a dozen cases reported in this country. Thirteen now, I guess. Twelve, and your daughter.”
He knew with a certainty what testing was to prove to be true. She has Guillain-Barre, an autoimmune response triggered by a virus where the immune system eats the ends off of the nerves. Think of a tree with limbs and branches, she still has intact limbs (which is why the nerve tests kept coming back normal, they only tested the major nerves) but the branches are mostly gone from her knees down.
“How do you know?” I asked. “How can you be so certain?”
“Because I’ve seen it in person.” He said simply. “I used to go on mission trips to rural China.”
***In Googling Guillain-Barre during the next few days, I discovered that it is a known side effect of the arthritis drug Enbrel that she had started taking within the month before she got sick. All of the doctors, including the one who had prescribed it had missed the occurrence of a known side effect.
***Had she been properly diagnosed in the beginning, she would have received IVIG (Intravenous Immunoglobulin Exchange) which likely would have stopped and probably reversed the creeping paralysis. Had they paid attention, she would likely be walking today.
On our way home from his office, I asked her how it felt to finally have a diagnosis. In typical Ella style, she shrugged and said, “Not any different really. I always knew I wasn’t faking.”
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