Ground Zero – August 2014

Ground Zero – August 2014

In August of 2014, our 13-year-old son contracted a stomach virus with high fever. It was just like any other bad stomach/fever virus, except for one thing . . . it triggered a condition called Dysautonomia (means that our son’s autonomic – or automatic – nervous system is damaged). Dysautonomia is the umbrella term and depending on what parts of the nervous system are damaged, there are more specific names. In our son’s case, he has POTS (Postural Orthostatic Tachycardia Syndrome). This means that the parts of his nervous system that are damaged are the parts that regulate blood flow & digestion (although, in his case, mainly blood flow).

What were his symptoms? Well, some were immediate and some developed over 6 months. After the acute initial virus, he had terrible continuing stomach pain/nausea, loss of appetite (and weight loss), low-grade fever, fatigue, headaches, and very enlarged nodes in his neck. Over time, he also developed exercise/activity intolerance, syncope (fainting), light-headedness upon sitting or standing, low red & white blood cell levels, low blood pressure, low ferritin (iron) levels, low vitamin D levels, a couple episodes of partial vision loss, insomnia/sleep problems, heat intolerance, and extreme pallor (very pale face).  His taste for food also changed.  Prior to being sick, he was a big eater and loved meat.  For many, many months, he had zero appetite for anything except bland things with bread & cheese.

For 9 months, we sought advice and answers from many, many specialists – all of whom were tops in their fields (we live near a very large city and have good access to medical care). Over the 9 months, our son endured an incredible number of blood tests and invasive procedures by pediatricians, oncologists, ENT doctors, neurologists, infectious disease doctors, & gastroenterologists. No-one could figure it out – all the tests were normal. We chased every “rare”disease that fit the bill and put ourselves and our son through the blender in the process.

After 9 months, we were lucky enough to get an appointment at the Mayo Clinic in Rochester, MN. We spent an entire week there & found ourselves in the most extraordinary medical system we have ever known: efficient, timely, knowledgeable, and kind.  Dr. Philip Fischer was our main doctor in the Adolescent Medicine Department. Within 5 minutes of our first appointment with him, he diagnosed our son with POTS and we spent the rest of the week running the appropriate tests to support the diagnosis (Tilt Table Test, Food Motility Test, Sweat Test, blood work for ferritin & vit D levels, etc). We had an amazing team of doctors under Dr. Fischer, including a cardiologist, a neurologist, & a gastroenterologist. We had appointments packed into whole days, specialists who had all been briefed by one another and who were working toward a common goal, & one central computer system.  It was amazing to find such a knowledgable team of doctors who were able to diagnose our son so quickly after 9 months of “normal” tests and zero answers. It was an incredible relief to finally have a diagnosis (we weren’t going crazy!!) and a plan of action.  I couldn’t be more thankful and appreciative of the Mayo Clinic. There is no better medical care.

As a side note, the Mayo Clinic has pioneered the research and treatment of POTS. The term “POTS” was coined in 1993 by a team of researchers from the Mayo Clinic. However, POTS is not a new illness; it has been known by other names throughout history, such as DaCosta’s Syndrome, Soldier’s Heart, Neurocirculatory Asthenia, Chronic Orthostatic Intolerence, and others. And, in fact, Mayo’s history with POTS dates back to the late 1800s, when the Mayo brothers studied the effects of “Soldiers Heart”. The Mayo Clinic is definitely the “Mothership” for POTS research and treatment.

Leave a Reply

Your email address will not be published. Required fields are marked *