18 hours ago
Wednesday, December 17, 2008
Good doctors for special-needs kids vs. bad ones
You know those Wordless Wednesday posts other blogs do? Well, here at To The Max it's Word-Filled Wednesday, cause I've got a lot to say. Thanks again to everyone for the reassuring messages about Tuesday's seizure scare. I was sorry to hear that some of your kids have been having them.
On the train to work, I called the nurse at Max's school and asked her to describe what she was seeing that had concerned her. Turns out it was this weird movement Max occasionally does in which he grimaces, stiffens and raises his arms, all at once. The whole thing happens in maybe two seconds, then he relaxes and he's back to usual Max.
I told the nurse that he has been doing this for years, and that I had pointed it out to the neurologist when I first saw it. And then I explained why sending home forms titled "ASSESSMENT OF SEIZURE ACTIVITY" can be very unnerving to a parent and that going forward, I would like a call. Later on, I spoke with our neuro, whom I absolutely adore. Dr. C is smart, nice, sane, funny, down-to-earth. Every mom of a child with challenges needs a Dr. C in her life. I told him what had happened and he basically said that at worst, what I was seeing is a tic but because Max is wired differently than other kids, what might just be a shoulder shrug for a typical child would involve Max's shoulders along with his arms and mouth. (Interestingly, studies show that one out of every six boys in elementary school has tics.) There is no kind of seizure that fits the description of what Max has been doing.
Dr. C is amazing. In contrast, I think back to this one doctor I visited when Max was three months old. He was a neonatologist, someone who specializes in the care of newborns. In the course of examining Max, this doctor told me that the only other moms he'd seen whose babies had suffered strokes were crack moms (yes, he said that). And then, when he finished looking Max over, he told me that Max's limbs were very stiff. He told me that a bilateral stroke was a serious thing (no shit, Sherlock). And then he said "His future looks ominous." That's when I started crying. He said, "Hasn't anyone told you that yet?" I couldn't even respond, I was so despondent.
I ended up seeing the social worker in his office afterward. And as I sat there blubbering my heart out, I got good and mad. I told her that he had no right to use a word like "ominous," that no doctor should ever use that word, that babies' brains are plastic, that Max had potential. And if I didn't have HOPE, what did I have? I walked out of there and never came back.
I do have fantasies about marching back into his office with my walking, communicative, bright, personable Max and saying "SEE?!" But a doctor like that, well, he'd just look at Max and say: "He's not talking, and his limbs are still tight." Who needs that?
I'm curious, tell me about a doctor you've taken your child to who you adore—and a doctor who you wish you'd never met.