But... there's always a but. We were disappointed that we waited over 6 months to get in to see this doctor and he did nothing more than the same evaluation that a regular pediatrician does. He was good and nice and all that, but Brian said it was literally the exact same questions and exercises that his pediatrician had done at his last check-up. Why are we told to go see all these specialists when they're not actually doing anything special? It's a giant money-making conspiracy, seriously that's not just hippy talk. It really is. This specialist just kept referring us to more specialists too! He insisted Sebastian needs to be seen by a neurologist annually as well. This is after he just said he's doing fine developmentally. So he needs to go see another specialist for what? The exact same evaluation? I emailed the genetic counselor at OHSU (where he had his DNA test done, so far the only specialist we've seen that was worth the time and money) and asked her opinion. She said for NF1, they don't recommend patients see a neurologist unless they're having specific problems. I was so happy to hear someone agree with us. The only neurologist he's seen so far was not our favorite doctor as she wanted to do an MRI (that required full anesthesia) even though he didn't have anything wrong with him and didn't even have a confirmed diagnosis at the time.
This developmental specialist also recommended Sebastian be re-evaluated by the physical therapist (which was not covered by our insurance last time and cost over $300). Since he's getting the free assistance from the school district, we opted to go that route instead. She said the same things we've noticed, he still is not able to do a true run (where both feet are off the ground for a moment). But he is able to keep up with most of his peers with his fast walk. She didn't have any concerns and neither do we. So for regular physical therapy, we'll continue with gymnastics, bike riding, and walking. I'm also hoping to add more regular yoga at home for him as he really enjoys it (for a few minutes anyway). He's been taking a karate class as well but admitted yesterday that he wants to do something else after this class is over.
I understand that all of these doctors are just covering their ass. I get it, we live in a crazy country where plenty of people are just waiting for their doctor to make a mistake so they can create a stupid lawsuit. I just don't want to put Sebastian through any unnecessary tests or procedures. He may have a lifetime of poking and prodding ahead of him, so I'd rather save it for later when he might actually need it. Especially things like MRIs which at this age are a much bigger deal than when he's a bit older and can sit still for the whole thing without needing sedation. If he shows signs of a tumor we will of course do the MRI, but thankfully he still seems quite healthy.
So next on the list of specialists.... none!
|In the doctor's waiting room|