As a new mom 12 years ago, I felt so intimidated by parenting that I read every expert I could find on the subject. When Amelia was born with both a developmental and medical disability, I read and consulted with doctors even more. My OB, who had safely shepherded me through a risky pregnancy, instructed me not to read outdated literature on raising a child with Down syndrome. She said this because she was fully aware of my tendency to research problems. In fact, she was so respectful that we often discussed the science of my own pregnancy during office visits.
Improving Diet: “Not Worth It”
My second child was born a few years later and by age 2, we knew something was amiss. At 3, we brought Zoe to a pediatric specialist in our area. This wizened lady, with far too many degrees and residencies weighing down her walls, gave her the diagnosis I had dreaded: autism.”
I’ll never forget that day, sitting shell-shocked and helpless as the doctor shuffled paperwork into my hands, gave me some generic resources and wished us luck before sending us on our way. I knew this was a condition with unknown consequences and in my panic, I dug through my brain to find a light in the tunnel before us. “What about the autism diet? She waved her hand dismissively. “Not enough success to make it worth the effort.”
That was it? “Good luck”?
Things didn’t get any easier. Two years later, we were a family on the brink of our own meltdown. Zoe slept in 4 hour shifts, rising and jumping up and down on us to play. We all were cranky, edgy and snapping at one other. Something had to change.
The Change that Affected Everything
So I went back to my tried and true fallback: research. It turned out there were few conventional options: Nighttime routines. Barren bedroom walls. No food after 6pm. Increasing doses of melatonin.
Nothing worked. Then a friend asked if I had tried the autism diet. No, I said, after all, it’s too difficult. It doesn’t really work, right?
And then it struck me: I couldn’t? Why not? Because some doctor told me “it wasn’t worth it”?
You see, doctors often will not endorse anything without epidemiological research that has been peer-reviewed. When the doctor said, “not enough success,” that’s what she meant – she had not seen studies to support it.
But the key? She said, “not enough success”, which meant there had been some. If there was a tiny chance this diet could help, wouldn’t that be worth a shot?
Anything was worth a try at this point, so we did it. A month later, a funny thing happened.
There was more, though: Amelia also benefitted too. Not only did she improve in school, she stopped having sinus allergies – the same allergies that doctors for years had told me were just “part of Down syndrome.”
Everything changed for me once we saw that sleepless nights were no longer a part of our lives. I started reading medical literature. I was not intimidated by it since my experience with my OB had showed me I could do it. I learned how to investigate resources. I got back to reading, this time a whole new field of experts for whom autism was not the end of the story but a leg in a journey.
There was hope. Who knew? Maybe there could even be healing – for both my girls.
Doctors Aren’t Infallible
Doctors are not computers. They can only retain so much knowledge and they don’t know your child as well as you do.
This is not to say that there aren’t any good traditional doctors. See my first paragraph? Dr. B was amazing and old school. There are some things that require medical care from a qualified M.D. but to say that all doctors are always right, always caring and always operate from their patient’s best interest is short-sighted at best. No one is that perfect or accurate.
How to Choose a Doctor You Can Trust
Here are some key tips that your doctor might not be the person you had hoped:
- He or she answers your questions with disdain, as if you were foolish to ask them. Eye rolling is a dead giveaway that they do not respect you or your opinion.
- Modern nutrition is foreign to them. They don’t understand concepts like gut balance, healthy bacteria, healing symptoms with food, healthy fats, they don’t question toxins like BPA or glyphosate, etc.
- They answer everything as soon as you ask. There isn’t anything you haven’t stumped them with, nor is there anything that science has not completely and faithfully figured out yet.
- They scold you for asking logical follow ups when their answers don’t satisfy you.
- Their first solution to problems is medication, which they frequently prescribe without always explaining, in detail, side effects or consequences such as, “You can’t stop taking this medicine once you start.”
- They have accepted a LOT of funding or “perks” from the pharmaceutical industry. You can find out how much at the public information site, Dollars for Docs.
Now, in of itself one or 2 of these things might not be all that bad. You have to weigh the good with the bad: your personal experience, whether or not they’ve helped you, whether you’ve done your own due diligence or are going on hearsay, the gut feeling you have about this person and their practice, etc. Are you asking informed questions or just spouting something you’ve heard on Facebook? Do they have a specialty in the area you need help in, and if you leave them, are there other choices? Have you wrongly assumed they were in the wrong before you even asked?
Selecting a doctor is not like choosing what’s for dinner. Recommendation from friends, research into their history and a look at their health grades are as important as whether or not they are on your health plan. It might not feel that way but when you encounter a serious health problem, your physician should be your ally in helping you navigate this issue for yourself and your family. To ensure that, you have to ask the question can you trust this person with your life? Some day, you may need to.
If you asked that woman standing with a newborn 12 years ago, if she’d trust her child’s medical care to her own knowledge, she would have said you were crazy. Standing here today, watching my kids’ progress, I can tell you that I am anything but crazy. How do I know? When you live with a child with disabilities, it is hard to see progress. Then you meet someone and they say, “Well, done. Whatever you’re doing, keep doing it. She’s doing great.”
And that’s how you learn to trust your inner mama. Never doubt her. Never take her for granted. Never let anyone bully her. Listen to her. She is your guide to helping your child thrive. And she will teach you how to choose a doctor you can trust to care for your child.