After our fall appointment out of state, I decided it’s time for J to have a local orthopedist. There’s no reason to see Big Name Doctor until J is closer to needing surgery. We can do regular x-rays here and send them to our other hospital if necessary for a second opinion. I called our local Marfan clinic this week and magically got an appointment to see their orthopedist two days later (yesterday).

Now, the doctor himself is fine. I have no doubt he knows the spine inside and out, though some of what he said in terms of Marfan-specifics is a little different from what I’ve heard elsewhere. Still, really nice guy who was great with J, and I feel like we’ll get good guidance from him. Plus, it sounds like this hospital is doing or will be doing the Magec rods soon, and I think I’d want to go that route if he needs surgery at a young age (I believe they’re approved for ages 10 and under).

Specialist aside, the other people we met with today were a little more questionable. J’s nurse asked if he’s on losartan for aortic stenosis. Ummm….how about the opposite?! Clearly orthopedists aren’t cardiologists, but if you’re going to specialize in Marfan you ought to know the most basic part of it, right?

The “best” was this conversation that J had with the resident though.

Resident: So J! Are you going to be the next Michael Jordan or Lebron James? Going to be a basketball star?

J: No.

Resident: Why not?

J: My mommy won’t let me.

Way to self-advocate, son! Even at 4, he knows the rules. I was both proud of him, and ticked at the resident. His stupidity rubs in what J can’t do, and he’s already sensitive to that!

“That’s right, I won’t let you and more importantly your cardiologist won’t let you!” I said.

The resident asked if that’s because he has a PDA. No. Again…Marfan = aortic aneurysms.

Like I said: I don’t expect every doctor to know everything about Marfan. But if you’re working in a Marfan clinic, no matter the speciality, you ought to at least know that the most dangerous part of Marfan is aortic aneurysms/aortic dissection.

Luckily, the actual doctor knew enough to ask about his aorta and eyes. We went over J’s xrays and his scoliosis isn’t at the point of needing intervention yet, but we’ll go back this summer to continue to monitor.

I’m proud of J for handling appointments that are scary for him (like this one), and for starting to advocate for himself.