Starting in middle school, my daughter Nora would complain of seemingly benign symptoms. Obviously, these issues were a nuisance to her, but nothing that caused too much alarm for me. Because Nora was frustrated by these symptoms, I took her in to see the doctor, but even when we got a diagnosis, we never really got to the root of the problem. It was during these years that I eventually realized that while doctors are the expert on medicine, I am the expert on myself and my child.
Somewhere around the 6th grade, Nora said that standing up made her dizzy. So, the doctor told her to eat a snack and stand up a bit more slowly. Then she had difficulty with running in her PE class. Her pediatrician diagnosed her with exercise induced asthma. She was still able to keep up with ballet classes four to five days per week, for up to four hours at a time. I couldn’t make sense of this.
When Nora started high school, she joined the marching band. This turned out to be a struggle for her. She loved the challenge and the group effort but found herself exhausted and in pain. During the fall of her sophomore year, she had a rapid decline in her health. She was no longer able to just keep up in band.
One symptom that continued that I couldn’t get out of my mind is that her legs would get splotchy red and purple patches all over. It never seemed like it was significant, but suddenly I remembered an image I had seen on my friend’s Facebook page. My friend’s son suffered from postural orthostatic tachycardia syndrome, or POTS and she shared on social media to educate. (Coincidentally, this friend is the reason that I started sharing my health concerns. I’d love to help someone the way that she helped Nora and me!)
When I read the line about red-ish legs upon standing, something just clicked for me. I sent the image to Nora and asked her which of those symptoms she had. My heart sank a little when she replied, “all of them.” It seemed certain to me that Nora suffered from POTS.
The pediatrician was not so easily convinced. She (incorrectly) expected Nora’s blood pressure to be elevated to move forward with a POTS diagnosis. Still, I insisted that Nora be referred to a pediatric cardiologist. During her first appointment with this cardiologist, she was diagnosed. It was then that treatment could finally begin.
It’s been almost two years since her official diagnosis and she’s found ways to manage many of her symptoms. The fatigue is still the most difficult to manage. She is preparing for some medical tests to determine if she has some new medical issues, but we are so much better prepared now.
Together, Nora and I have learned that, to get the best care, you must educate yourself. Get all the information you can. Talk to other people who share your illness. Read medical research papers online. Go to conferences specifically designed for patients. If possible, put yourself in a position that you’re speaking to experts. Join online communities.
When you speak to your healthcare provider, listen carefully to what they say. When it’s your turn to speak, they will be more likely to listen to you. Speak with confidence and insist that the provider listen to you. Share with them what you found in your research. Be patient and tread lightly but remember that YOU are the expert when it comes to your body or the body of your child.