Working with Specialists

Gaggle of doctors
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Some people call it "specialist roulette" -- that feeling of going around and around, seeing different specialists with different opinions, and wondering if you're putting your money on the right one. You may wonder how someone who sees your child for 20 minutes can give any sort of accurate diagnosis, or whether doctors who specialize in one particular malady naturally see it in every child they examine.

 There's a payoff to this game, however , and it's the fact that the right diagnosis (or sometimes, just a diagnosis that's right enough) backed by a professional can open the door to services, therapies and medications that will substantially improve your child's and your family's life. But like any game, there are rules:

Study the odds. Before you go to a specialist, do some research into what that particular pediatric specialty focuses on and the kinds of diagnosis your child might be given. Whether your pediatrician has a specific suspicion or you're just shopping around hoping to find an answer, check out the possibilities and know enough about them to be able to ask specific questions and offer at least a preliminary opinion on what you feel may be going on with your child.

Stand firm. Doctors may not be real happy to hear that you do have an opinion, but although they may be experts in their particular fields, you are the expert on your child.

 In order to be a member of your child's team, you will need to seriously consider all the information and advice you hear, but you will also need to make sure that your voice is heard. It's easier to do that if you've done some research and know what you're talking about (and what they're talking about, too.)

Know the players. Whether you're referred to a specialist by your pediatrician or are choosing your own, ask around to see if anyone you know has had any experience with the doctor or doctors you're considering. If you have family or friends in the medical profession, or know someone who knows someone whose child has special needs, or can find an organization in your community that provides help to special needs families -- call in those contacts and see if you can find out what kind of reputation the specialist has. If what you hear makes you feel uncomfortable, look elsewhere.

Keep track of what's happened. Keep a binder or folder with every specialist's report, details of every conversation, and notes on your own thoughts and impressions. Bring it every time you go to a doctor's office. And don't agree to have a specialist's report sent to anyone besides your child's pediatrician and yourself: Be sure to read it over and have any inaccuracies corrected before you personally pass it on to your child's school or other specialists.

 (I've been known to white-out parts I didn't agree with before making a photocopy.)

Eliminate distractions. Be sure to bring something to keep your child occupied, not only during the waiting-room exile but during the exam itself -- better still, bring your spouse or another adult along so you can pay complete attention to the professional in question. Chances are, the doctor will spend as much if not more time talking to you than actually interacting with your child, and the last thing you want is to be so busy corraling and amusing and quieting your little one that you can't pay attention to what the doctor is saying; or worse, get that "Ah, so the parent can't control the child" look that tells you the exam is going to be more about you than the actual patient.

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