Tried and true ways to advocate for your child to help physicians find a diagnosis and cure
When you’re parenting a child with complicated medical needs, it can sometimes feel like you spend your whole life visiting and talking with doctors and therapists. These medical professionals are experts on the conditions they treat, and we choose them for that expertise. After all, we want to know we’re getting the best care possible for our children.
The painful lesson I learned when I was the one taking my daughter through dozens of specialist appointments was that, even though I worked hard to find the person that knew the most about each issue that arose for my daughter, it turned out that physicians themselves often operate alone, in silos. In the nine years of Sammi’s journey to good health, I found a heartbreaking lack of collaboration between physicians in different specialties, physicians and other medical professionals, and physicians and parents. I saw my daughter’s care divided into bodily systems that seemed not to connect. When your child has issues that seem complicated because they affect more than one area of the body there are five strategies I learned that can help your child’s doctors work as a team to put all the pieces together.
Give each doctor a “Medical History” document for your child. Sure, you’ll likely have to write some of this information down again on different doctor’s forms, but if you lay it out clearly and hand it to her during your first checkup, it will let you highlight the most important information. You can find a sample document here.
Collect several of each doctor’s business cards. When you’re visiting the pulmonologist and he asks a question about your child’s allergy medicines, you can hand him the allergist’s business card. Sure, he could look up that information later, but having it in his hand or the pocket of his lab coat saves him time and energy.
Don’t be afraid to ask “why” and “why not.” When you ask if your son’s ear aches could have any connection to his recent dental work, and the ENT doctor says “no,” it’s OK to ask why. You don’t have to push; you can ask “Can you tell me why you feel comfortable ruling that out?” or “What do you see that makes you think it’s something else?” Not only will it help you understand more about their thinking, it might also trigger you to remember other important details about your child’s symptoms that you can ask this doctor, or the dentist, at the next appointment.
Read the test results and come prepared with questions. Some tests are read and interpreted by one set of doctors and given to another set of doctors to explain to you. When you see these results — maybe through the medical records you can access in your child’s account — don’t be afraid to ask whether your child’s doctor agrees with the assessment of the radiologist or lab technician. Though there are guidelines set for “normal” levels that seem fine to the lab, your doctor might notice a trend or a shift from the last set of results that isn’t fine for your child. Also, you might notice something your doctor missed! It’s always OK to ask, “Can you explain why this level is elevated?” or “Can you show me where the fracture is on this x-ray?”
Ask nicely if your child’s doctor is familiar with your child’s previous surgical procedures. This may seem like a given, but it’s not. Children with complicated medical histories have long, complicated medical charts. Doctors may not have had time to read the entire chart, and it’s better for you to know that early in the process. You can tell them gently, without judgement, about the things that are the most important. “No problem, Dr. Smith. I can fill you in. Joey had appendicitis at age 4, and he had his appendix removed by Dr. Martin at Children’s Hospital. After that…” This way, all the most important details are fresh in her mind when you need her expertise.
In an environment where your child’s pediatrician works in a different building from your child’s gastroenterologist, who works four floors away from your child’s endocrinologist, who works across town from all of them, it can be hard to create a collaborative environment.
As parents, we become the hub of this huge wheel of specialists, often the only person who can coordinate information and connect everyone to each other, virtually or otherwise. Knowing all of the ways your knowledge and expertise are valuable and useful can have a profound effect on the outcomes for your child.
Debi Lewis is a writer from Evanston, Illinois whose work has appeared in The New York Times, Huffington Post, Kveller, ScaryMommy, Brain Child and more. She is at work on a memoir about parenting her daughter through a medical mystery.