Betsy Kanarowski: “Gina asked me to write about the experience of my daughter, Alexa, being undiagnosed. I found myself putting this task off, not because I didn’t want to share our story, but because as many of you unfortunately understand, it is emotionally difficult to go back to the fear and powerlessness that ruled our lives during that time. Alexa is currently 15 years old and finishing up the 9^th grade. The 5^th grade was the last year she attended school full time. Half of 6^th grade was missed due to mono, and chunks of 7^th grade were missed due to a difficult to diagnose and treat traumatic brain injury. The 8^th grade started so well and we were hopeful that medical issues were behind us. Alexa was healthy again, active in sports, and having fun in and out of school. Until she wasn’t. Until a cold at Christmas left her bedridden, dizzy, weak, unable to think clearly, struggling with debilitating headaches, chest pain, and stomach pain, and losing weight. Then came the rounds of doctor appointments, tests, theories, and treatment approaches. Mono again? Post concussive syndrome? Migraines? Chronic fatigue syndrome? And of course, the diagnosis all too frequently given the undiagnosed: psychiatric. In Alexa’s case, the theory involved anxiety, which she steadfastly denied.

The weeks stretched into months. Alexa was a shell of her former self and had not returned to school. My husband and I were scared, I had used up all my sick leave at work, Grandma had become a full time caregiver, and Alexa’s sister was angry that our lives revolved around illness. A physician friend suggested Mayo Clinic, and our pediatrician supported that idea. After a week at Mayo, we gratefully left with a diagnosis: postural orthostatic tachycardia syndrome (POTS), a form of dysautonomia. We had never heard of it, but it turns out that POTS is not that rare. In fact, an estimated 1-3 million Americans have POTS. Unfortunately, it takes an average of almost six years before people are accurately diagnosed, and 83% of people are incorrectly given a psychiatric diagnosis prior to POTS diagnosis.

Alexa is learning to live with a chronic condition, and with treatment her health is improving. She has a 504 plan at school to excuse her frequent absences, and although she took two classes online so she could have early release to go home and rest, she has successfully attended school this year. With a diagnosis came understanding and feelings of control instead of helplessness. I allow myself to think and talk about Alexa’s future again.  I hope to educate others about POTS, and perhaps save another family struggling with POTS the stress of being undiagnosed.”

POTS information/resources:

https://med.uth.edu/pediatrics/files/2014/02/MAYO_Clinic_Teens_Dysautonomia_copy.pdf

http://www.dysautonomiainternational.org/page.php?ID=30