Blog Posts

Updates Since Returning from Mayo PPRC

Updates Since Returning from Mayo PPRC

  AFTER THIS UPDATE SECTION, PLEASE START TO READ THE BLOG POSTS FROM THE BOTTOM UP – FIRST BLOG IS CALLED “GROUND ZERO – AUGUST 2014”.  Like other blogs, the most recent entries are on top.  My story starts at the bottom. ————————————————————————————————————————————– UPDATE – SUMMER 2018 – It has been 4 years since I got sick with POTS and what a difference 4 years has made!  I just finished up my junior year in high school and I had…

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Other Adolescent Success Stories from Mayo PPRC

Other Adolescent Success Stories from Mayo PPRC

There are thousands of PPRC success stories … we could be here all day.  Here are just a handful of them (aside from me!!!!): Success story with Complex Regional Pain Syndrome  – “Courtney’s Story – Mayo Clinic Pediatric Pain Rehabilitation Center” – https://www.youtube.com/watch?v=IKngXdH2f2Y (6:21 min) Note: before arriving at the Mayo PPRC, this young girl, Courtney Cassidy, was told by two specialists that the only solution for her leg pain was amputation (her nurse Dan gave us several of our lectures &…

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Going Home Overview, Staying in School, Bad Day Plan & Relapse Prevention

Going Home Overview, Staying in School, Bad Day Plan & Relapse Prevention

All kids graduating from the PPRC need to continue to focus on “how well am I functioning?” (instead of “how do I feel?”).  A great side effect of functioning better is a decrease of pain and/or symptoms.  The PPRC has a 70-80% success rate (meaning fully functional), 6 months out of the program.  What are the pitfalls? (1) patients stop doing the program when they start feeling better & (2) the parents don’t do their part to help keep the kids on the…

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Eating with POTS & the Effects of Starvation/Malnutrition

Eating with POTS & the Effects of Starvation/Malnutrition

POTS & Intestinal Problems: For many of the POTS kids at the PPRC, eating is a primary issue due to intense stomach pain.  Why?  POTS causes terrible GI symptoms including extreme (and unceasing) nausea, slow food motility (food does not move through the digestive track in a timely fashion), constipation or diarrhea, poor absorption of nutrients, pain and cramping, and gastroparesis (paralyzation of the intestines).  Again, why all this?  It’s a blood flow issue due a broken autonomic nervous system…

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Changing Your View on Stress & Cognitive Behavioral Therapy (CBT)

Changing Your View on Stress & Cognitive Behavioral Therapy (CBT)

Stress is simply a reaction to a stimulus that disturbs our physical or mental equilibrium.  Stress has a big impact on chronic pain and symptoms.  Stress increases pain and pain increases stress.  It is important to learn how to manage stress in order to help break the pain/stress cycle.  Changing your view on stress is also very important.  The TED Talk by Kelly McGonigal (listed below) is an amazing lesson on changing your view on stress. See the following videos on…

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Diaphragmatic Breathing, Relaxation, Biofeedback, & Distraction Techniques

Diaphragmatic Breathing, Relaxation, Biofeedback, & Distraction Techniques

Diaphragmatic breathing, relaxation, biofeedback, & distraction are all important strategies for (1) pushing up the parasympathetic (”rest & digest”) nervous system & (2) controlling and reducing pain and/or symptoms.  As noted in previous blog entries, pushing up the parasympathetic nervous system automatically pulls down the sympathetic (’fight or flight”) nervous system (like a pulley system).  Kids who are chronically ill have fight or flight responses that are in overdrive.  By pushing up the “rest & digest” part of the nervous system,…

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How to Effectively Deal with Chronic Pain and/or Symptoms

How to Effectively Deal with Chronic Pain and/or Symptoms

All of the teens at the PPRC suffer from chronic pain and/or symptoms. Because long-term use of pain medications can lead to addiction and greater pain in the long run (“hyperallegisia”), they are not the answer.  So how do you deal with the pain and the symptoms? In order to answer this question, we must first understand all of the issues involved & discuss the following topics: central sensitization, the autonomic nervous system, and neuroplasticity. Central Sensitization: Stress is a…

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Acute vs. Chronic Pain

Acute vs. Chronic Pain

Before we start discussing how to alleviate chronic pain, let’s get a clearer understanding of the different types of pain. 3 Types of Pain: Acute Pain < 3-6 months obvious tissue damage intensity will likely go away you can see or know problem area hurt = harm pain is a reliable signal that you have tissue damage Chronic Pain > 6 months all healing has occurred (but maybe not nerves) pain may be in excess of physical findings pain intensity…

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Mayo PPRC Basics (Quick Summary)

Mayo PPRC Basics (Quick Summary)

After being totally immersed in daily classes, doctor’s rounds, therapies, and discussion groups, it takes some effort to step back and try to get organized around all of the principles that we learned at the PPRC.  My notebook is completely full of notes and here is my first effort at summarizing them (in no particular order): ELIMINATION OF PAIN BEHAVIORS & NEUROPLASTICITY BASICS — This one is huge and an unexpected component for us.  Big rule as soon as you…

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Side Note: Video lecture & overview on POTS by Dr. Peter Rowe of Johns Hopkins

Side Note: Video lecture & overview on POTS by Dr. Peter Rowe of Johns Hopkins

This an an excellent talk on Postural Orthostatic Tachycardia Syndrome (POTS) by Dr. Peter Rowe, a noted POTS researcher and pediatric cardiologist from Johns Hopkins.  This video would be an excellent one to share with your healthcare providers to provide them with some educational material on POTS. http://www.dysautonomiainternational.org/blog/wordpress/doctor_rowe_pots_lecture/

Autonomic Dysfunction

Autonomic Dysfunction

WHAT IS AUTONOMIC DYSFUNCTION? Autonomic dysfunction is a physical illness in which the autonomic (automatic) nervous system isn’t working correctly. Autonomic dysfunction was discovered in 1993 in adults & 1999 in teens. Due to it’s relatively “new” nature in the medical community, it is still not fully understood. WHAT DOES THIS MEAN? The autonomic nervous system automatically regulates several body functions including: heart rate, blood flow, digestion, skin temperature, breathing, & adrenal system. With autonomic dysfunction, several (or all) of…

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Summary of Mayo PPRC Core Treatment Components (from PPRC booklet)

Summary of Mayo PPRC Core Treatment Components (from PPRC booklet)

Throughout the 3.5 week program, various types of treatments and therapies are provided in an integrated program to help each patient achieve success in returning to an active and happy life.  The following are the core components of the program (I will go into more detail of each one of them in future blogs): PHYSICAL THERAPY: –Involves strengthening, stretching, and aerobic conditioning. –Focuses on increasing stamina and functioning, and teaches more efficient ways of moving the body, so that daily…

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Side Note: Survey Conducted by Dysautonomia International – Statistics of the Invisible Illness

Side Note: Survey Conducted by Dysautonomia International – Statistics of the Invisible Illness

An online survey conducted by Dysautonomia International in Dec 2013 reveals stunning statistics about patients who spend years trying to figure out what’s wrong and trying to learn why they can no longer function “normally”.  Of the 700 respondents with POTS: –Average time to diagnosis (from first symptoms): 6 years (for over 20%, it was 10 years) –Percent who received a psychological diagnosis before their POTS diagnosis: 83% –Percent diagnosed by the pediatrician or primary care doc:  12% –Percent who…

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A Note to the Skeptics

A Note to the Skeptics

I know you are out there … the family that has tried everything over many years to “fix” their child’s POTS or chronic pain issues.  You’ve seen specialist after specialist and no one can figure it out.  Maybe they have told you that it’s in your child’s head or in your head.  Or maybe each specialist has prescribed a different pain medication or analgesic or antidepressant/anti-anxiety medicine and now your child is medicated through the roof.  For POTS patients, maybe you…

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Primary Goal of Mayo PPRC – “Functional Restoration”

Primary Goal of Mayo PPRC – “Functional Restoration”

The Mayo PPRC program isn’t designed to be a “cure” for the underlying illnesses, but rather a program to teach kids how to get back to a fully-functioning life despite chronic pain or symptoms.  The techniques & tools that they teach here are FANTASTIC LIFE SKILLS that would benefit everyone (not just sick people).  In fact, my 2 goals for writing this blog are (1) to get the PPRC information out to the general public and (2) to raise awareness about…

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Mayo PPRC Daily Schedule

Mayo PPRC Daily Schedule

KIDS’ DAILY SCHEDULE: 7:45-8am – check-in at front desk & complete morning paperwork 8-8:30am – Stretch (this is a group stretch & movement routine – parents are encouraged to attend as well) 8:30-9am – Goal Setting & Relaxation 9-10am – Stress Management 10-11am – Physical Therapy (all routines are individualized depending on the child’s needs and/or ability level) 11-12pm – Coping Strategies 12-1pm – Lunch (all the kids eat together at a reserved table and parents eat together nearby) 1-2pm…

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Orientation Days – Mayo PPRC

Orientation Days – Mayo PPRC

Days 1 & 2 of the PPRC program are orientation & assessment/testing days. After checking in at 7:45am, we filled out paperwork, met my 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…

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January 2016 – Mayo Clinic Pediatric Pain Rehabilitation Center (PPRC)

January 2016 – Mayo Clinic Pediatric Pain Rehabilitation Center (PPRC)

I was 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 my chronic stomach pain & nausea were no longer an issue, we decided that I should attend the program due to my on-going fatigue, exercise intolerance (with “crashes”), & symptoms around poor blood circulation (dizziness, heat intolerance, face pallor, blood pooling in legs, etc.).  I started with the program on January 6, 2016….

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March – Dec 2015 – Improved (But Continuing) Symptoms & New IV Iron Treatments

March – Dec 2015 – Improved (But Continuing) Symptoms & New IV Iron Treatments

As I discussed in the previous post, our son’s symptoms greatly improved on the Mayo protocol & we were extremely happy with his progress.  He even started attending ¾ day of school in Sept 2015 (we attempted full day, but didn’t make it).  He was still far from his “normal” self and had symptoms that were affecting his ability to function normally, including low ferritin levels, exercise/activity intolerance, & fatigue.  With the exercise intolerance, he would still “crash” after too…

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Our Journey Starting the Mayo Protocol – March 2015

Our Journey Starting the Mayo Protocol – March 2015

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…

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More Background (Fall/Winter 2014/2015) & the Mayo Protocol (March 2015)

More Background (Fall/Winter 2014/2015) & the Mayo Protocol (March 2015)

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…

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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…

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