From the Rheumatologist’s Office

Last updated on: August 22, 2014 at 3:46 pm by Rebecca Frech

From the Rheumatologist’s Office 2014-08-22T15:46:59-05:00 Rebecca Frech

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We saw Ella’s rheumatologist, Dr G, last Tuesday. I’ve struggled since then with what to write about that visit. It’s not that there was anything bad or negative about the visit itself, it’s that Ella has become an expert googler. She can now research with the best of us, and it makes me have to choose my words more carefully. A test, word, or phrase that my readers wouldn’t notice, sends her on a rabbit chase that ends when she understands every potential meaning of what was said.

I’m glad that she does. When she is a grown woman, untangling this medical maze will fall to her, and she will need to be ready. On the other hand, she’s 10 and not great at filtering out the things which don’t apply to her situation.

With that in mind, here’s my purposely vague update:

We were relieved to see that her rheumatologist had returned from maternity leave. There is nothing quite as comforting as a familiar face or the gentle smile of an expert who already thinks we’re good parents. We didn’t have to prove our worthiness or intelligence before she would listen to us, she jumped right in with the proper medical terminology which has become so familiar that I find it reassuring.

I showed her the pictures of non-wrinkling toes, and mentioned the cold hairlessness of her legs. Dr G nodded in agreement that these things seemed to be significant.

After a moment of deep thought, she said, “I don’t know anything about the non-wrinkling toes. I’m not a neurologist. It’s weird, and my fast google search in the back says involuntary nervous system damage, but you already know that from your own research.”

She turned to her medical student assistant and quipped that when you have smart, resourceful parents you save time by listening to what they’ve found. “I’ve seen more parents correctly diagnose weird conditions than I’ve seen doctors do it. Parents don’t know enough to stop at normal.”

She read carefully through the same timeline of disease that I’ve posted on this blog before saying “Here’s what we’re going to do. Children’s in Dallas has a new neuromuscular specialist that we stole from Mayo. You need to see her by the middle of August. Don’t worry, I’ll put you in her schedule myself. I’m not going to play ‘hunt and peck’, we’re simply going to run blood tests for every autoimmune disease we can check for that way. I’ve never seen one that looks like this, but that means nothing. I’m going to order a genetic screening for the seven inherited conditions which come with fevers. After that, you’ll be seeing the geneticist, who is also at Children’s, within the month. I’ll make that appointment for you too.”

The mention of Children’s Hospital in Dallas filled me with dread, and she saw it on my face. She smiled serenely and held up a hand. “I know you have had issues with Children’s in the past, but that’s over. This time you have physical proof, and…my name on the top of your papers. This is about to be a whole new experience for you.”

And that, beloved readers, is how a real doctor gets things done.

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