TUESDAY TOPIC: A FEW WORDS ABOUT DOCTORS

First Word: Enter new doctor appointments with an information sheet.

Second Word: Don’t settle. Find the right doctor.

Third Word: Get an accurate diagnosis if a secondary diagnosis is suspected.

Information Sheet

Dr. Skotko and One Lucky Little Patient!

It took me a few years to figure out this ingenious little medical helper, but by the time my son Jonathan (now 28, DS) had been through heart surgery, scarlet fever, and pneumonia, the light bulb went off. It was an invaluable time-saver and made doctor appointments extremely effective, so here it is:

Prepare a short but official-looking information sheet on your child, with these basic headings:

Name of Child

DOB

Today’s date

Diagnosis: (include all possible Diagnoses, e.g., “probable ASD, suspected CAS [Apraxia], etc.)

Current Issue: (this is the reason you’re sitting in the doctor’s examining room)

Past hospitalizations, surgeries, major illnesses, etc. (be brief):

Current Medications:

Allergies or Special Diets:

Tip: Be brief, succinct, pithy: no paragraphs. Just get to the point. You want the doctor to be able to read this quickly but thoroughly, as you sit there waiting for him to gather this crucial information.

Why do this?

1. You won’t believe how efficient this makes your visit, and how much it can improve the medical attention your child can get. And you won’t accidentally forget to mention something that would impact a doctor’s treatment decision. In the stress of the moment (with your child likely needing your attention), it’s too easy to forget to mention something important. With this info sheet, you’ve pulled together in one visual sweep everything important that’s scattered in your child’s medical files.

2. Doctors love it. Without exception, every doctor I did this for appreciated it. After all, it makes their job of caring for your child much easier, and they didn’t miss some important tidbit of information.

Find the Right Doctor

On that topic, here’s a passage from my book “Down Syndrome Parenting 101”:

“My work tutoring children with Down syndrome has brought me into close contact with many parents and their struggles or triumphs in finding a doctor who is a good fit for their child and themselves…

In some ways, medical times have changed since Jonathan was born in 1985, but today I still see parents making the mistake of “settling” for a doctor who reads from a very different book than they do. My message to you is: don’t settle. Don’t settle. Did I say that already?

There is a best doctor for every family, ‘A lid for every pot.’ You just have to find the right fit. Don’t give up until you do, because you’ll need to rely on this doctor’s help for years.

My own search took eight years. When I finally found the right doctor, my relief was palpable. I finally had a ‘team doctor,’ and I knew we would work together for Jonathan’s best care. I absolutely trusted him, and nodded to his knowledge and experience when we were of different minds.

This is what you’re going for: confidence in the doctor’s knowledge, experience, and intuition; and mutual trust and respect.

‘Sometimes I feel like I’m the doctor when I meet with my daughter’s pediatrician,’ one young mother told me. If you find yourself thinking, as she and other parents have, ‘Who’s the doctor here? Me?’ you might want to weigh the strengths and weaknesses of your choice and consider putting out a new search.”

HOW to find the right doctor?

If you’re lucky enough to have an online support group in your area, post the question: “I need a developmental pediatrician familiar with Down syndrome in or near My Town, etc.”

You can also consult www.yelp.com to check out doctors that friends might have suggested. Yelp has led me to the best doctors, dentists, chiropractors…you name it. Especially when you’re just starting out because your child is very young, or you’ve just had to relocate to another city, this can be a great resource. On Yelp, you’ll read what other patients have said about the doctor.

Get an Accurate Secondary Diagnosis

About secondary diagnoses…even now, in 2013, I am sometimes horrified at the stories I hear. Recently, a mother told me, “My child with Down syndrome is 6 and cannot speak even a single word, though she’s very bright. I asked my pediatrician about it, and he said, “Oh, that’s just because she has Down syndrome. Don’t worry about it.” Another mother of a 12-year-old with Down syndrome who is completely nonverbal was actually told by her pediatrician, “Oh, he’ll talk when he’s ready.”

Excuse me? What? How many kids with Down syndrome do these doctors know? Yes, speech delay and articulation difficulties are typical of the syndrome. But a bright six-year-old who can’t speak a word no matter how hard she tries? A completely nonverbal 12-year-old who can’t attend to anything in the classroom? You’re looking at a secondary diagnosis. This is not something to sweep under the rug.

Getting a correct and early diagnosis, no matter what the secondary diagnosis might be, is critical; if it’s Childhood Apraxia of Speech (CAS), for example, or if the child is on the Autism spectrum (ASD), specialized therapy is going to be needed, and the sooner, the better. If the problem is swept under the rug by a careless (or poorly qualified) assessment team, and given the description, “developmental speech delay,” for example, that’s not going to get your child the help he needs. You need a medical diagnosis, which CAS or ASD are. A medical diagnosis will get you needed therapy; the diagnosis of “developmental delay” is not a medical diagnosis and will not get you that help. So be sure there isn’t a secondary diagnosis impacting your child’s life.

A Recap:

1. Enter new doctor appointments with an information sheet.

2. Don’t settle. Find the right doctor.

3. Get an accurate diagnosis if a secondary diagnosis is suspected.

Eh…What’s up, Doc?

I’ll tell you what’s up: a fantastic, caring, knowledgeable (or at least receptive to learning about DS), “best fit for you” doctor. Look until you find him/her, and don’t settle!

Searchlights Beaming,