Fool me once, but not twice

April 9, 2008 at 11:37 pm 4 comments

     We’ve run into some wonderful doctors in C’s life, and some truly horrible ones as well. There was only one, however, who made ME cry. It’s a bad sign if a doctor sends in someone else to take the patient history, because in C’s case, the doctor almost has to hear his medical history at the same time s/he is looking right at him. It’s so difficult to reconcile what he’s been through with what he is now that if you read it without seeing him, you expect him to be curled up in a ball in the corner unable to speak or walk. When C did not display whatever behavior this particular doctor expected him to display, she became very dismissive. Combine that with C being his charming self and asking her how much she weighed (a phase that has passed – I never quite figured out how to explain that one to strangers in the grocery store), she turned to me and said, “I see a very beautiful little boy. Why are you here?”

     This was long before we had a real diagnosis for C. People were throwing the autism word around a little bit, but no one had landed that on him yet. We still weren’t sure there wasn’t something far more serious going on, and knew there were tests still to be run. I knew she saw children whose bodies were far more afflicted than C’s, but there were very real concerns about his health: his failure to gain any weight from the time he was 18 months to the time he was 3.5; his puzzling, random, serious limping episodes that landed him in the hospital once because his doctor was so concerned and still continue to this day; and his complete inability to handle even the smallest of colds without it exploding into pneumonia or something close to it.

     Why are you here?  In that single moment, I went from being a rightfully concerned mother whose child was making the rounds of various specialists – none of whom could seem to pin down the multiple irregularities in his bloodwork into one particular medical diagnosis – to a mother who was wasting a doctor’s time. I felt like I was projecting something onto my child that simply wasn’t there. As if, because he was happy, charming and engaged with her, she summed up his diagnosis (or lack thereof) in mere seconds just by looking at him. He simply was being his usual self.

     And so began C’s run at fooling some experts – not many – but a few. I left that doctor’s office in tears that day, frustrated that he and I were not taken seriously. Since then I’ve learned to run from professionals like her, but I also chuckle at how easily they’ve been fooled by a young child.

    

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Entry filed under: autism. Tags: , , , , , , .

On my birthday C-isms, part III

4 Comments Add your own

  • 1. T$  |  April 9, 2008 at 11:50 pm

    we expect doctors to be on a different plane than the rest of us mere mortals, but they are not. just like every other profession, doctors have their share of idiots.

    WHAT? They’re MORTAL? LOL…you’re right, of course, I just never expected to land in the offices of the ones who are the idiots. But I do see a really scary trend these days with such a proliferation of meds prescribed. I know C may need some medication someday, but I still ruffle at that one doc we saw who wanted to put him on a very strong OCD med within 5 minutes of meeting him – no history taken, no discussion about what might be behind the behavior he was having a problem with at the time (which, as you know, we’ve worked through successfully), etc. It’s really frightening to me.

    Reply
  • 2. Casdok  |  April 10, 2008 at 12:41 am

    Yes you do learn quickly that the doctors are not the experts!

    I remember coming out of our first appt. with a neurologist (silly me, I took the first doc with an appointment – not realizing in that case it was because the guy was so BAD), and my husband said, “How’s it feel to know more than the neurologist?” I still crack up about that one. I wish there were easier ways to learn these lessons sometimes!

    Reply
  • 3. Carol  |  April 10, 2008 at 12:59 am

    We, too have had our bad experiences with doctors. Sayer seems to have a sixth sense when they don’t “get” him and showcases his most difficult behaviors just for them. And when we do find a good one, we stick with them.

    I enjoyed finding your blog through the “Dessert First, or not” carnival.

    It is tough – I remember going to a doc who told us he wouldn’t treat C as a patient if we continued on b-12 shots. While I appreciated his honesty, I also felt sorry that he could so easily dismiss something that makes such a difference in our child. I too enjoyed finding YOU on the blog carnival and enjoyed your post. It’s such a struggle, because one thing helps one kid, and doesn’t do a darn thing for another. You kind of have to pick and choose your way through the muddle and find what works.

    Reply
  • 4. awalkabout  |  April 10, 2008 at 4:25 am

    We have a heck of a time finding an “autism doctor”– a neurologist 30 miles away made the dx, but was so ABA entrenched, we couldn’t continue with him. Pittsburgh has a number of specialists, but it’s so far, and we’ve lucked out with a couple of therapists who keep us on the behavioral track and assure us what we’re seeing is “normal,” for lack of a better word.
    The pediatrician’s office, though, is funny. There are 4 medical professionals; the main doctor has finally realized this is a big town for autism and learned a few things about it. The second is a nurse practitioner whose daughter has PDD issues, so she’s great. The third doctor is a big, teddy bear kinda guy, who goes with the flow, doesn’t know much about autism, but is willing to listen to what I know. The last doctor sees me coming, just gets out his prescription pad and says “What do you want?” Which if I know what I want is great, but if I’m lost and need help…not so much.
    I enjoyed both of you participating in the carnival–we’ve got another coming the end of this month. Please come again!!

    It’s nice to find a doc who will listen to you, which is why the one who “turned us down” because of b-12 shots frustrated me so much. We had a ped once who was the best – she was really, really interested in C and was willing to send us anywhere or do anything or prescribe anything. She was open-minded, and even suggested we not vaccinate C until we got to the bottom of a few medical things that were going on (I was pretty surprised at that!). I really appreciated her. A lot of the time I had to bring things to her instead of the other way around, but at least I didn’t feel as though I was completely in charge of my child’s medical needs, which is the way I’ve felt sometimes. And with everything else, being completely responsible for your child in that way is a little scary.

    The carnival was great! If anyone wants to check it out, go to http://www.awalkabout.wordpress.com. Very cool.

    Reply

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