Friday, February 28, 2014

Here We Go Again...

This past Monday we had an appointment with a neurologist I waited 4 months to see. She is a doctor I saw speak at an Epilepsy conference last October, and who really seemed to get all the "side effects" of Epilepsy (behaviorally) that our current neurologist doesn't seem to know much about. Plus, she is head of her department, as opposed to the medical resident we've been assigned at our current practice, who is a wonderful person, just, you know, a medical resident. I wanted a second opinion with this woman. To know we are doing, and have done, everything we can in regards to B's seizures. I wanted to sit down and talk with someone experienced. I remember being at the conference, and a family spoke about how they had gone to several different neurologists when their son was first diagnosed. Over and over they were told they already had the best, and to stop looking. I wanted to see "the best", too.

In the end, though, I'm not sure it was worth the wait. She was different than I expected. Not as animated and social as she was at the conference. She told me B will probably outgrow his seizures, and acted as though we were wasting her time. Don't get me wrong, she was good with B, but I could tell that she didn't consider us one of the serious cases she is probably used to handling (which is probably why she spent the majority of the appointment talking to B about Minecraft and his other interests, instead of asking me about his seizures.) She said she'd follow us "if we wanted", with a shrug of the shoulders. To me, B's Epilepsy is serious, but I suppose because there is a chance he could one day be seizure free, we just weren't interesting enough.

She also brushed off my behavior concerns, and of course had to give her opinion on his Aspergers diagnosis. That even though we had a 6 hour neuropsych exam done through the autism center that is part of her hospital, she just thinks he's highly intelligent and "a boy". Even though she admitted that the neuropsych was very thorough, and even though I told her it was the school BCBA who really thought he had Aspergers and told us to get an evaluation, she wasn't convinced. She told me she'd have the psychologist who works with her take a look at his testing, see if she agreed or disagreed with the diagnosis.

It pissed me off.

We weren't there to discuss anything other than B's seizures. I certainly wasn't there for a 2nd opinion on his Aspergers diagnosis, especially when she isn't a neurologist who specializes in anything other than Epilepsy. I'm tired of every doctor and nurse we come across thinking I *want* their opinion on any diagnosis my kids carry. There's nothing I want less. 

At first, I tried convincing myself the appointment had gone really well, but once I was able to process everything, I realized just how much she brushed me off, and it really bothered me. Not because she wouldn't do anything differently, but because she seemed uninterested. Instead of taking time to discuss my concerns about the seizures, she spent most of the time challenging his diagnosis on the spectrum, or talking about topics unrelated to why we were there.

I really hoped I'd be seeing that passionate, caring, knowledgeable person I saw speak. I should have known better. Doctors who are department heads don't want cases like B's. Regardless of how scary his brand of Epilepsy is to me, cases like his don't peak the interest of a seasoned neurologist. B isn't a waste of time, though. He's a kid who had 6 tonic/clonic seizures over the course of 3 weeks, and whom I worry about every day. I want a doctor who gets that. And you know what? Our inexperienced medical resident does. She is always there to email, or call, and never makes me feel like I'm wasting her time, or that B's Epilepsy is no big deal.

She also doesn't question his Aspergers diagnosis, because, you know, she's met him, and knows it's not just "intelligence and boy". She also knows we see her for seizures, not autism.

I guess I've learned a valuable lesson: bedside manner, personality, those things can sometimes be way more important than how much experience a doctor has. It's important to see someone who isn't jaded, or just looking for the most severe case. Who thinks B is just as important as I do. Even if he one day does outgrow his seizures, it doesn't mean I don't worry now, especially since his type of seizures are the ones most associated with SUDEP. Excuse me if I don't brush his Epilepsy off, and skip along home.

So, we're sticking with our current neurologist. She's not "just" a medical resident, she's someone who cares about my kid, and knows he's worth her time.


  1. I'm sorry the appointment, the wait, all of it was so disappointing. :( I'm glad, though, that you've come to peace --- or at least seem to have --- with keeping your current doctor. That's a good place to be. You want someone who really cares about your kid and who is willing to pursue those answers, even if they don't know them yet.

  2. Did you tell the neurologist that you weren't interested in revisiting your son's Aspergers diagnosis or that you'd been looking forward to the appointment because you loved her approach to the behavioral aspects of epilepsy at the October Conference you attended? Did you try to redirect her attention to the reason you had booked the appointment with her (vs letting her talk Minecraft with your boy)?

    It's your appointment and you're the one who hired this particular neurologist -- it is your call. Depart em if she is a department head.

    (I always find it helpful to keep in mind that a specialist doctor, particularly a super-duper specialized doctor like a pediatric neurologist deals only with epilepsy, is that it takes a *particular* kind of person to spend 15+ years in grad school becoming a neurologist and then spend all day, every day, for decades dealing only with kids with epilepsy. The sort of people so very interested in young brains with epilepsy that it never gets boring, that each and every kid brain with epilepsy is sooo fascinating despite the fact that she's seen a million of them. These are the sorts of people who very, very often have all their proverbial eggs in the brains basket, ie none left for the social skills basket. In my experience, this sort if doctor is often good enough at what they do to make it worth your while to overlook the lack of bedside manner. In the spirit of proactive disclosure, both my parents are pediatric nephrologists with what could be charitably called limited social skills *sigh*.

  3. I am sorry you were disappointed with the doctor, but in the end it's a win, you feel better about B's doctor so even if your appointment with the specialist was not what you expected, you now feel confident about who is treating B. That's victory.