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Monday, December 19, 2011

Doctor Shopping

Since we're in the mood for updates....

We have an important appointment tomorrow afternoon. We've waited three months and tomorrow is finally the day.

We are in the market for a new neurologist. We've had the same one, pretty much, for the last two years. But it's time to move on.

Why are we moving on? Well, anyone who knows this particular neurologist often has something to say about his bedside manner, his lack of personality, as well as mentioning all of his other unsavory attributes. Let's just say he rubs a lot of people the wrong way. That was evident upon our first meeting when he told us in so many words we should more or less consider pulling the plug on Christian if things should go down hill. Consider us rubbed wrong.

Since that blessed day, I've learned a lot. I've learned to respect him in a funny way. He's very smart. And he's definitely an acquired taste. It's either his patients love him or hate him. More often then not, it's the latter.

I don't fault him for his bedside manner. I don't need coddling anymore. I've dealt with enough doctors and specialists to know it's their jobs to state the facts for our own good. Period. I can't get hung up on whether someone is nice to me or not while doing it.

The reason we've decided that it's time for a change in neurologists is because Christian's current neurologist has had to refer us to other neurologists twice. Once, when I inquired about the keto diet. He admitted he didn't have experience with it so he referred us to a neuro in Phoenix. The second time I inquired about the VNS. Again, he had limited experience and would have to refer me elsewhere. I've asked him about experimental drugs and he has limited knowledge. Our relationship with this neurologist has turned into an ends to a mean. He prescribes medicine and administers botox. End of story.

The point is when it comes to the treatment of kids like Christian, he practices medicine in a box. Christian is outside of that box. And he needs outside of the box thinking. This doctor's main focus is to maintain Christian. I need a neurologist who seeks to progress Christian. I didn't know there was a different until I met the neurologist in Phoenix who oversaw the keto diet. She was assertive in that we couldn't just accept the current circumstances, we had to seek out other options for the best Christian we could get. (Light bulb!)

Other reasons we're choosing to make the move involve this doctor just not expecting anything from Christian. He hardly knows him and he's been his neurologist for over two years. And he has never, ever said anything remotely positive about Christian. No "He looks good!" No "He's doing well." Maybe that's not his job. Maybe that's coddling. But people who truly know Christian know that he is doing so much better and don't hesitate to say it. Note to neurologists: Parents are looking for your acceptance and validation of any progresses, no matter how minute, whether we want to admit it or not.

So we have an appointment with the neurologist who wears the big NO SEIZURES pin on his lab coat. He's the doctor who initially evaluated Christian for the VNS. He's an adult neurologist who sees some children and his team of epileptologists has been amazing.

If for some reason this doctor tomorrow can't take Christian on as a patient, we'll go with plan B - the awesome neurologist in Phoenix who introduced me to the idea of progress in the first place.

I'm praying we'll find a good fit and that tomorrow's appointment will be productive in our search for a new neurologist.

Stay tuned!


pinksarahh said...

Praying for you!!! I would be looking for another one too! Progress Christian! PROGRESS! :)

Merry Christmas!

Martha said...

Wow Shauna. My husband could have written this. He has said, and I'm sure thought, every word here. He would so love to meet you. I too think these things, but have a harder time with any expectation I can hold our MDs to that standard. But you are absolutely right to expect that kind of care. Every word you wrote about your previous neurologist is SPOT ON for your physiatrist (the rehab MD). I just plain avoid him at this point, which is not so hard because we are so busy with neuro and other things. Congrats on searching for and finding a neurologist who will strive for the best. Good for you. :)

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