My son has been sick a lot during his life. Fortunately, it hasn’t been anything too severe, but especially during the first two years of his life, it seemed pretty constant. And while some of it was totally normal, typical childhood stuff, we also saw our fair share of specialists.
You know that it’s bad when the doctor says that your son has conjunctivitis and you’re relieved. Yeah, he has to be out of school for a day, but it doesn’t have a huge impact on quality of life and there’s a relatively easy treatment for it.
At least the doctor knows what the problem is with conjunctivitis (or as I call it, the Conjunc). With my son, it has often been the case where the doctors don’t know what is wrong and they call a specialist. And then another specialist. And then another. And after a whole battery of tests, they often still don’t know what’s wrong, but as long as he is thriving, growing, and developing normally (whatever the hell that means), the general answer has been to wait and see.
Once you’ve been to the pediatrician often enough (plus three gastroenterologists, two pulmonologists, an immunologist, an allergist, an ENT, an infant chiropractor, an accupressurist, and literally dozens of nurses at nearly a dozen different medical establishments), you pick up a bit of knowledge about child medicine whether you want to or not. Along those lines, my wife and I were recently asked what questions to ask a specialist in the event you have to meet with one. We discussed it, and here are, in our opinion, the 10 most important questions to ask (or at least the first ten that came to mind):
1. What are you looking for and what does that mean in terms of impacts to his/her life?
This seems like an obvious one, but you have to ask the doctor what they are looking for and then explain it. You want to make sure that the doctor explains how whatever it is that they are looking for is going to impact your child’s life. This will impact how you react to all the other questions.
2. What is the action if the test is positive?
This question is all about figuring out what’s going to happen next and how to take care of whatever is wrong. Will there be surgery? Medications? Further tests?
3. What is the action if the test is negative?
I think this is a question that people normally don’t ask the doctor, but it’s really important to ask. If the test comes back negative, will the doctor want to do more tests? J had pneumonia a lot as a kid and also had a chronic cough. A doctor wanted us to do a test for Cystic Fibrosis (definitely a good move), but once it (thankfully) came back negative, we had to figure out what to do next. Hopefully you can stop there, but it’s definitely good to ask.
4. What is the action if the test is inconclusive?
In my opinion, this is almost as bad as the test being positive (not quite as bad, but it’s close). If the test is inconclusive, there will most likely be more tests. When you don’t know what is going on, you’re going to stress out. You’re going to worry. You’re going to, technically speaking, freak. Inconclusive results suck. Find out what the doctor is thinking if it happens.
5. What are the next five steps you will be taking?
This kind of sums up the previous three questions. It’s important to ask the doctor what they are thinking of for the next plans so you can start doing research once the initial tests are done.
6. If you make it through the next five steps and still have no conclusion, what then?
This question is important because it begins to get to an end game decision. At a certain point, as a parent, you have to weigh out what makes the most sense. There is no definitive answer for what makes sense (it really varies based on what symptoms you are seeing), but we always wanted to weigh the impact of the testing versus the impact of what might be wrong.
7. What are the possible side-effects/impacts of the test/procedure?
You don’t want to just ask about the common side-effects/impacts, but about ANY side-effects/impacts. One of my favorite quotes is that there are three types of lies in this world: lies, damned lies, and statistics. We always found that doctors said that “most” children experience things in one way, but J was always the minority there. I mean, it took him three hours just to recover from anesthesia when he got his tubes put in! Even if only 20% of kids experience something, that’s still one in five. Even though it isn’t probable, I think it’s still worth considering.
8. (If something is found) What is the likelihood that it will resolve itself?
J had reflux as an infant. Pretty bad reflux actually. We did the modified barium swallow, and after constant discussions with doctors, the question was always whether or not to put him under anesthesia again (see my content above!) to test to see if there were any structural issues. It took a while, but the reflux did resolve itself. That’s the thing about a lot of infant medical issues; kids grow up. Ear canals grow, reflux gets better, muscles get stronger. It’s nice to know from the doctor if things can naturally get better.
9. (If all tests are negative/inconclusive) At what point do we stop testing?
Doctors like to run tests to find out what is wrong. From our experience, specialists particularly like to run lots of tests. Even if you as parents decide you want to stop testing, it’s good to find out what the doctor is thinking too. At what point is the doctor willing to say that it will get better or that it’s growing pains, or that because the tests showed nothing, the doctor is willing to say that nothing is wrong.
10. If this was your child, what would be your course of action?
This is really not meant as a snarky question. A lot of times, the doctor is offering a couple of options, and asking this question can help refocus the conversation. As a parent, your child means everything, and it’s important to ask this question so you and the doctor are on the same page. There are doctors who will tell you honestly what they would do in your situation. These doctors are the best ones out there.
One last thing. You can always say no to a doctor and you can always ask for more time to research. Don’t be afraid to do this!
From my experience, doctors really do appreciate when you ask questions. The way I see it, all of us in the room are trying our best to help my son. Asking questions creates a dialogue between us and the doctor and allows us all to be at the same place in helping him; the doctor being responsible for the medical side, and my wife and I for the social/emotional/developmental side. We are all in it together.
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