For some of us, it has been difficult getting physicians to listen to us. It has reached the point where we have our own theory. We are ready to POUNCE on the doctor to get an answer! We have been through the ringer and we finally have a referral. This doctor will hear us and (hopefully) be able to get us a diagnosis.

How Can We Talk to Our Child’s Doctor and Get Results?
We want to be prepared. Bring your journals and research, but give the new doctor a chance to process it. What you believe and what you have researched are very important. There is a time to talk and a time to listen. The great news is this new doctor has a FRESH PERSPECTIVE. This is a doctor who has a chance to see the whole picture right from the start.

What Should We Do Then?

What to Say
Share your journals at the front desk and politely state, “I have this documented journal of my child’s condition, and I wanted the doctor to have this copy for my child’s record. If they could take a look at it so we could talk about it when we called in that would be great.”

They may or may not accept it. If they do not, you put it in your bag and you try again in the room. When the doctor comes in the room wait for them to talk to you. You see where they are going to take you first. They will begin asking you about your child’s condition. You then present your journal.

“I brought this for my child’s record and for you. It has all of the history and symptoms of his condition. It also has the test results from our other appointments and records that were provided to us. I thought this might help us sort through what is going on,” this is what you say to them. They will take it and hopefully read it. Give them a minute to process what you just handed them.

If they decide not to read the journal right then and want to talk, it’s time to focus on a few things only.

What To Focus On
Focus on your child’s symptoms, severity and length of time with the symptoms. After all, we are there to sort through these symptoms. We want to get treatment to make our child’s suffering end. We want to focus on how the condition is altering your child’s physical health, as well as developmental health. What’s important is getting the recognition that these symptoms are a condition. We need to know which one and what to do next. It’s the physician’s job to sort through these things, order tests and get the answers for you.

What NOT to Say
Remember how you felt when every other doctor you met treated you like your ideas were meaningless? Not good. We don’t want the person who can get you some answers to feel like they are not appreciated either.

Here are the DO NOTs.
DO NOT – tell the doctor what tests to run.

DO NOT – tell the doctor what your diagnosis of your child’s condition is.

DO NOT – tell the doctor about every incorrect diagnosis made so far on your child.

What Happens If You are Displeased With Your Appointment Progress?
Ok, so you are not impressed with the reaction you are getting. You are feeling brushed off again. If this is how you feel after you have made it through most of the appointment, you can then ask questions to prompt a response you want.

What to ask?
Situation: You want your doctor to run certain tests you researched related to the diagnosis you have in mind.

Question for your doctor – “I have heard of a genetic test that can determine what type of periodic fever condition [sub your child’s condition that you suspect] – is that true?”

“Is there a test called [test name here] that helps diagnose or rule out [this condition]?”

“What does [this test] determine? Could it help us determine what’s going on with him?”

Situation: Your doctor doesn’t want to run tests and isn’t seeing the symptoms you presented as a condition they treat.

Questions for the doctor – “Is there a doctor who would be better to talk to about what is going on with my son?”

“If this isn’t something you treat, what do you think it might be? Who could we see to talk to about that?”

Situation: Your doctor doesn’t want to make any type of diagnosis and also doesn’t want to refer you to another doctor. You feel they are incorrect for dismissing your child’s symptoms.

Questions for the doctor – “I have done some research and I feel like maybe there is something wrong with him. What I have read about are kids with [name of condition here]. He seems to have similar or exactly the same symptoms. Is there any test you could run to at least rule this out so I feel more comfortable leaving this appointment without a diagnosis?”

“After my research, I feel strongly that there is something wrong with my child. I would like to speak with a doctor to help me get a diagnosis. If this doesn’t fit your specialty is there another specialty that might help us?”

The key here is to ask for help rather than insist you know more than your doctor. They will not appreciate it. You will likely be met with resistance if you insist on having something done. If you ask a question they hear you asking for a professional opinion and you are giving them credit for their profession.

These are hard communication skills for anyone. On top of that, we have months or maybe years, of previous appointments where we have been dismissed for what we believe. We have frustration and irritation at all of our appointments that never produced results. It has worn our patience. Recognize this before you speak at the appointments. It’s not the new doctor’s fault nobody has helped you yet. Give them a chance to try to help you. If they can’t ask them who can. It’s not time to give up, you might need a different approach (next week’s blog post) to get results. Ask rather than demand and stick to it!