Becoming a “POTS-ie” Parent: The Journey to our Child’s Chronic Illness Diagnosis

It innocently started in January of 2019... our thriving and vibrant 16-year-old daughter, Jade, had the flu.

Normal for that time of year, but this turned out to be different because it seemed to trigger a ton of other health issues that we had no idea were headed our way. She started complaining of joint pains, mainly in her elbows, ankles, and knees. She started having migraines, almost daily. She started having anxiety attacks, ongoing GI issues, and utter exhaustion to where she couldn’t even get out of bed. She started blacking out every time she stood up and even passed out while at voice lessons, but thankfully her teacher caught her. She started missing mad amounts of school and went from being a Straight-A student and in the National Honor Society, to having D’s and F’s in the spring semester of her junior year… one of the most important semesters for a future college-bound student. We were losing hope on what to do.

After several blood tests, which showed she had some auto-immune and inflammation levels, her PCP decided to send us to Children’s Hospital to get her tested for connective tissue disease. Jade had an auto-immune disorder as a younger child called ITP; could this be related to that? She hadn’t had symptoms in years. “Dr. Google” taught us about different possible ailments, and of course, always depicted the worst diagnosis out there… so we focused and waited for our first Children’s appointment to come with Rheumatology. In…