What We Talked About Yesterday At Boston Children’s Hospital

First off, thank you all for caring so much about our little family. Thank you for the messages, thoughts, ideas, prayers, and support. As you know if you are a regular reader of this page, we had a very rough fall. One of the most oft-suggested piece of advice during our time of trial was “You need to go to Boston Children’s Hospital.” “When are you going to Boston Children’s Hospital?” “Why haven’t you already been to Boston Children’s Hospital?” And when things went severely downhill, we finally decided to make an appointment.

The thing all of you well-wishers may not understand is that our neurologist is “the guy.” He started the program in Boston, and is now the top pediatric neurologist on the east coast. When people in Boston have problems, they are sent up to us. Just because Boston is big and fancy, it doesn’t mean that it is going to be more helpful than what we have already going on. We knew that, but when things were not getting better we had no choice but to try to at least get a 2nd set of eyes on the situation.

It wasn’t easy to set up the appointment. There was no protocol. No one had ever been referred down to Boston from our doctor, because he is the best doctor. There are plenty of systems in place to get patients from Boston to see him, but nobody had any idea how to get us away from him and back down to the team of doctors he had personally trained. We started out in their general pool of new patients, on our way to seeing some resident somewhere, which would not have been helpful. Luckily our guy called his friends and got us in directly to one of the top neurologists in Boston and we were set to make the trip.

Here’s the thing: in the past two months since we made the appointment, things have settled down. Zero seizures in the past 2 months. Even weaning him off the medication that had originally controlled things, we are still seeing no problems. Yes, there are behavioral and other side effects that we are still dealing with, but the plan is working and the other meds he is on are holding steady. No breakthrough seizures. So now we are in Boston, and wondering why. When we arrived for our appointment yesterday, the first thing they asked us was “what do we want to get out of the appointment?” and I looked at my wife and almost shrugged. When we made the appointment what we wanted was help. We wanted relief. We wanted a miracle. We were desperate for anything they could tell us, any little thing that might have been missed by the doctors in Vermont. But now we have had our miracle, temporary as it may be (hopefully not). So why were we there?

I know you all want to know what is happening, and I know it is because you love us and are concerned for us. Thanks, again. Here is what I can tell you. We really like our Boston neurologist, Dr. Ham Burger. Dr. Burger was warm, lovely, knowledgeable, concerned, and hopeful. She wondered why her friend was sending us down to her, when normally she sent people up to him, but when she heard our story she was sympathetic and happy to help. This is what we talked about: things are okay for now, so we are not going to do anything. If things go south again, we have some new options to play with that we didn’t have before. As I said, she is very smart, and she has a huge team working with her. This is, perhaps, the one big advantage of being in Boston. They may not have “the guy,” but they have a whole heaping pile of “not the guys,” and there is value in passing along a case study from one department to another. The genetics people there have some ideas for us, and the neurology people are mostly in agreement with our current plan.

We left feeling good about things, and my hope and prayer is that I will never need to write another post about a trip to the Children’s Hospital of Boston, but if we ever need to return we are in good shape. They know us now. We are in the system. This is valuable. And so we head home today knowing, at the very least, that we are good hands.

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Posted in Boston, Edward, Epilepsy, Health, Hospital, Parenting, seizures.

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