#mayoclinicbootcamp

Days 1 & 2 of the PPRC program are orientation & assessment/testing days.  

After checking in at 7:45am, my son & I filled out paperwork, met our head nurse, & got a quick tour of the facility.  Each patient gets a head nurse assigned to them in order to coordinate their program experiences & track their progress (like a case worker).  Additionally,  those nurses are available at any time for questions or concerns.  At the heart of the facility is a large atrium meeting area.  This is where the kids check-in every morning and where the parents can be found hanging out in between lectures & meetings.  The 2 photos below are of the central atrium & front desk areas.

For the kids, there is a large gym area with connected table desks, where most of their day takes place.  Additionally, there is an occupational therapy room, a multi-room physical therapy area, a biofeedback room, and many other offices/conference rooms that are used for various meetings.  The photos below are of the gym area:

Our son spent the entire first morning (8:15-11am) in cognitive testing while I attended my first Parent Group from 9-11am.  Parent Group runs 9-11am on M, W, & F.  This is where parents get together for program lectures and for question/answer sessions with the doctors and/or the attending professionals.  This is also where we really get to know the other parents & hear their stories.  It is amazing feeling to know that you are not alone.  Almost 6 new kids arrive every week to the PPRC (there are rolling admissions/graduations).  Almost every introduction with a new parent involves the need to process how much crap they’ve had to go through to get here.  For most people, this is the end of the road in many ways . . . and most of the roads have been several years or longer.  

We were given the opportunity to return to the Mayo Clinic (in Rochester, MN) and attend a program at the Mayo Pediatric Pain Rehabilitation Center (PPRC).  Although our son’s chronic stomach pain & nausea were no longer an issue, we decided to attend the program due to his on-going fatigue, exercise intolerance (with “crashes”), & symptoms around poor blood circulation (dizziness, heat intolerance, face pallor, blood pooling in legs, etc.).  We started with the program on January 6, 2016.

The PPRC is an intensive 3.5-week outpatient program that provides multidisciplinary rehabilitative therapy to adolescents with chronic pain, symptoms, or disease.  This program also provides therapy to the families.  Mayo’s Pain Rehab Center was among the first pain rehab programs and has been providing rehabilitative services to patients with persistent pain or symptoms since 1974.  It is now one of the largest pain rehab programs in the nation.

The primary goal of the PPRC is “functional restoration”.  For adolescents experiencing chronic pain or symptoms, this means improving the quality of their lives and facilitating a return to all regular daily activities.   

Important goals for participation in the PPRC include:

--return to regular daily activities

--return to school

--increase physical strength, stamina, & flexibility

--reduce use of pain medications & discontinue analgesics

--minimize pain behaviors

--learn stress management techniques

--resume leisure & recreational activities

--improve interpersonal relationships

--reduce reliance on health-care professionals, with improved ability to self-manage chronic pain

We started the Mayo Protocol in March of 2015 immediately upon leaving the Mayo Clinic (actually even while we were still there).  At this point, our son had been sick for 9 months.  We started adding the large amounts of fluid (mostly water) and salt to his daily dietary intake and gradually started some daily exercise. Additionally, he was put on beta-blocker medication (metropolol) & over-the-counter iron supplements to get his ferritin (iron) levels up.  We started his exercise with just walking.  We also put him back in school for 2 classes per day and he held this pattern through the end-of-year.  (In hind sight, we should have pushed him harder to get back to a full day of school more quickly.)  We also raised the head of his bed approximately 4″ for blood circulation training at night.  What was the result?  An almost immediate improvement of many of his symptoms.  The exercise & water intake seemed to be the most important components of the protocol.  

Over time and with gradual ramping up of his daily exercise & activities, his stomach pain/nausea decreased, his headaches improved, he was less fatigued (but still tired), his low-grade fever went away, he slept better, his appetite increased (and he started gaining weight), the nodes in his neck became less swollen, and his pallor improved.  After the first couple of weeks or so, we increased his cardio exercise to including interval running/walking & weight training.  In August, he was switched to a vasoconstrictor medication (mitodrine).  His smile and sense of humor returned immediately once he found some relief on the Mayo Protocol.  It was also so helpful to get him back to school for socialization.  It was really isolating and depressing for him to be home alone all day with mom and the tutors.  It was hard on mom too.  :/  

Prior to our son's initial illness, he was extremely active, healthy, happy, did well in school, and loved hanging out with his friends. He played sports his entire life and especially loved hockey and lacrosse. In fact, at the time of his initial virus and for the few months after, our son was playing on 3 hockey teams - a club team, a school team, & he was a practice player for a travel team. During the months following his initial virus, his symptoms would get worse (he would miss school & sports) and then get better after a couple of weeks (he would attempt to return to school & sports). This roller coaster of "crash and recovery" lasted until his crashes were so severe that we had to take him out of school full-time in January of 2015. 

 What we didn't know at the time (because we didn't get a diagnosis until March of 2015), was that taking him out of school was a horrible decision. His symptoms continued to worsen at home (despite all the "rest") because his body was getting more and more deconditioned (and less able to pump his blood properly). After our visit and diagnosis at the Mayo Clinic in March 2015, we started the "Mayo Protocol" to help his POTS symptoms and to try to get his "normal" life back. 

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.