Posts Tagged ‘kids with disabilities’

What makes a great doctor’s appointment?

December 8, 2012

a stethescope with a Winnie-the-Pooh toy attached

image courtesy of pixel_bunny via flickr

Recently, Chloe and I had an appointment with her neurodevelopmental pediatrician. This is a fancy term for a doctor who deals with kids with disabilities. At these visits, we talk about everything: medication, nutrition, equipment, school and more.

Dr. K is the one medical professional who is in a position to help us see the big picture, to piece together medical issues like prognoses, medicines and therapies  with social issues such as school, caretakers and community access, and to balance all these things into a healthy, sane life for our little family. It’s quite a challenge. Which is why it’s so important that this doctor be awesome. And she is. Here’s why:

She is tuned in to Chloe.

Most pediatricians are good with kids, obviously. But I have been to appointments where Chloe was an afterthought. Dr. K talks to Chloe, on her level. Whenever she can, she includes Chloe in the conversation and addresses question to her, even though it would be easier to let me speak for her.

She understands that the most important thing she can do for Chloe is have a productive relationship with me.

It doesn’t matter how much education and expertise a doctor has; if she doesn’t have the respect and cooperation of her patient’s parents, her advice is useless.

I’m not afraid to reject doctors’ advice. I have told a neurologist to put away his Botox, because we’re not interested. I have left one doctor’s office only to call another and get a second opinion on medication dosage. I have thrown away prescriptions, canceled therapy appointments, completely ignored advice. And Dr. K understands. She must do more than make pronouncements. She has to win me over. And she usually succeeds, because

Her recommendations are based on our specific goals.

Every child is different, and every child with CP is really different. But many doctor’s and therapists use a blanket approach, treating every problem they see, because the more CP symptoms they can get rid of, the closer you get to normal, right? Tight hamstrings? Monthly shot of Botox. Lots of extensor tone? That calls for a Baclofen pump.

But interventions always come with risks and sacrifices. Medications have side effects. Surgery has risks. Every piece of equipment we get costs money that could be spent on something else. Even therapy appointments are a commitment of time that could be spent on other things.

In Dr. K’s office, we talk about problems, but we also talk about why and how and if we need to fix them. Chloe’s hamstrings are tight, yes. But what function will she gain from Botox? We could get a $2000 stroller with Medicaid funds, but how much would we actually use it? Is it a good idea to take Chloe to physical therapy after school instead of using that time on homework?  Dr. K is honest about the drawbacks, realistic about the gains, and respectful of my concerns and priorities.

She understands that we can’t do it all.

I was a little nervous about admitting to Dr. K that I hadn’t been using the knee immobilizers she had recommended to stretch Chloe’s legs. They were hard to put on, uncomfortable and inconvenient. And our lives had been too hectic for something like that. When I explained this to Dr. K, she surprised me.

“I am so glad you didn’t worry about those,” she said. “With everything else that’s been going on, it sounds like it was just too much for you, and I’m glad you can see that.”

Wow. A doctor who understands that her patients have full, challenging and complicated lives, who is able to see medical concerns in the context of the bigger picture–that is a rare and valuable thing.

She cultivates an environment of honesty and trust.

All of these things add up to a doctor’s visit where I feel free to really explore what’s best for Chloe. Because I know can be completely honest with her, Dr. K gets a clear and accurate picture of our lives. And because she respects my role as Chloe’s “real” primary  care provider, and because she respects my intelligence and decision-making skills, Dr. K can discuss treatments and interventions thoroughly, in all their complexity. She can be confident I will follow through on what we discuss, rather than forgetting everything the moment we leave the building. Our appointments tend to be long, but they are worth it.

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