Sometimes, having a special needs kid is really hard, but you know who seems to like to make it a whole lot harder? Doctors.
Alex and Lyra both go to the same pediatrician office in Denver. We drive an hour to get there. We go because they are the only place around that accepts Alex's special medicaid and takes a natural approach. I'm very much against giving an antibiotic every time you see green snot. I won't lecture you about why it's extremely dumb and harmful to your health and the health of America in general, because then I won't be able to stop myself. Antibiotics and medications in general are vital life saving substances, but should only be used when there is genuine need! Anyways, I wanted to go to a well balanced practice that will only whip out the meds when there is real need and they are awesome about that. I trust them to tell me when it is truly important and they have always done so. This practice is also however, a rotating practice. They have a dozen different pediatricians and you see someone different almost every time. A few of them are the best doctors I've come across (and that means a lot considering how many Alex has seen). I keep drawing the short straw though, and getting their new very young doctor whom I've started to call Dr. Fetus Face.
Dr. Fetus Face is very young, he's the new doctor at the practice, has no kids, and has no experience with special needs kids. He's so freshly born out of med school and lacking in real life experience that he still quotes the textbooks like a bible. To him if something is not medically necessary, then it is wrong. Like breastfeeding after 6 months. According to the holy textbooks, it is super vital until 6 months for a baby's health, but after that is mostly just emotionally beneficial, so that means you should quit. Anyways, that kind of stuff irks me, since the other doctors have the wisdom to know that parenting is about so much more than what is medically necessary.
This week I brought Alex in for an emergency appointment because he is the worst he's even been, for noooooo reason. He's been VIOLENT and I mean... violent. He looks horrible. I can't really explain what's going on beyond the fact that I know something is not right. Often times when someone with Angelman Syndrome is violent, it means that they are in pain. I wanted to do a really thorough medical exam and discuss possible tests we could run to get to the bottom of this hellacious mystery. We got Dr. Fetus Face again. He was clearly uncomfortable and out of his element. He had no suggestions and didn't want to run tests on any of mine. He treated me like a hysterical woman and then left us to sit in an exam room until his lunch break. It was awesome. He told me to call Friday morning if nothing changed. Things are worse. I called first thing and guess who hasn't called me back? One of the toughest challenges to navigating raising a child with complex medical needs is dealing with all the doctors and their giant egos. There needs to be a full course in med school dedicated to listening, and another full course dedicated to treating people with developmental disabilities because frankly 8 out of 10 doctors I meet (and I've met so darn many) suck at both of those things so much that they have been unable to treat him properly. Now it's the weekend again and we have to decide whether we should attempt an ER visit with Alex or just keep watching and waiting. It's hard to be heard on this mystery illness because Alex can't tell anyone what's wrong.
I will say that the best doctor we've ever had was ironically, the poop doctor. Yep the gastro doc. He listens, he problem solves, he cures people. I literally can't say that about a single other doctor, seeing him is a joy, even if we have to talk in depth about poop.
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