I happen to have three children diagnosed with celiac disease, that lovely autoimmune condition where the presence of gluten in the intestine makes the body attack itself. No worries, they’re healthy, eating their gluten free fare with a smile, and five years in, we’re good.
But it certainly wasn’t always that way. In fact, it took us 7 years to get an actual diagnosis. Why? Because my children, well then my daughter, did not fit the definition of one with celiac. Her blood tests were negative and there was no stomach pain.
I see this a lot in my field of medical advocacy. People come to me after having been to doctors who’ve told them, ‘no you don’t have this’, ‘not that’, or the worst, ‘we don’t know, but we can’t help you’, before politely, or sometimes not so politely, showing them the door.
Over the years, I’ve thought of several key questions to ask yourself when you feel that something is wrong, but no one seems to be able to give you a diagnosis.
What Should You Ask Yourself
1. Have you been tracking the illness? Often, issues that are more subtle and not acute are much harder to diagnose because change happens over time, and often not as noticeable.
For example, your child doesn’t seem to be growing. Well, download the Denver Children’s Growth Chart, and start tracking the growth every few months.
Together with that, keep a food diary, and make a note if, and when, your child is sick, has a severe headache, etc.
Coming to a specialist with this tracked information can be quite helpful. When I could show the doctor that not only was my daughter not growing, but she was also falling further from the curve, he could see what I was saying.
2. Do I have all relevant medical records? I know this may sound obvious, but if you’ve visited 5 doctors in five years, you may not think to have the summary that first visit five years ago, but that information can be important.
In addition, if you go see a private doctor in the center of the country, another doctor through the kupah, and a third specialist somewhere else, they won’t have access to the info, and you may waste valuable time, when they either retest something that you already did or miss an answer that another physician already answered.
Take home message: Get a binder, some nylon holders, and put all the papers in one place, right when you get it in your hand. One binder per person.
3. Do you have your elevator pitch ready?
I think during the pre-diagnosis time with my daughter, I must have sat with at least 20 different doctors in a five year period. It doesn’t matter, public/private; no one has patience. You need to distill your child’s (or your own) situation down to five clear sentences that will provide the right background to begin, and you can give other details later.
For example, DO NOT START the discussion with your child’s delivery, when your child is seven, and has been having recurrent stomach aches.
Just as they teach you in business class to give over the essence of your business plan in one minute, in simple words, that mean something to the person in front of you, it is the same with health.
The template is as follows:
- Age/name of complaint/duration of complaint/relevant tests/relevant side issues
Example: “Joshua is 10. He’s been complaining of recurrent stomach aches on and off for the past six months, that sometimes are so bad he can’t go to school. He had a blood test recently and everything was negative. My other son has celiac.”
Take home message: Be brief, to the point, and focus on the relevant health information necessary to start the discussion.
Yours in Health,