Salt Water Run Repeat

Welcome to my blog.  You are likely here because you want to know more about the Mayo Clinic Pediatric Pain Rehabilitation Center (PPRC) experience for your child with POTS, Complex Regional Pain Syndrome, migraines, Post Concussion Disorder, IBS, chronic fatigue, brain fog, or other chronic illnesses/pain/symptoms. Or, you might have searched for adolescent fatigue or Chronic Fatigue Syndrome (CFS).  Or you may have a child with unexplained, chronic digestive issues (and all medical tests have come back normal and nothing helps).  In my opinion, if you have a child with chronic fatigue or prolonged unexplained stomach upset, you need to check for POTS as a possible diagnosis.  

My son (with POTS) & I attended the Mayo PPRC in January of 2016 for 3.5 weeks.  It was a game-changer for us.  The program should actually be called “How to Live a Better Life” because the information can benefit everyone, not just sick people.  It was a privilege to be able to attend this program and I will be forever grateful for the opportunity.  Our son is doing well, he attends school full time, gets good grades, is happy, and is participating in sports year around. 

How did we end up at the PPRC?  We had previously visited the Mayo Clinic for one week in March 2015, where we received our initial diagnosis of Postural Orthostatic Tachycardia Syndrome (POTS) and were prescribed a protocol for recovery.  Our son made great strides on the Mayo POTS Protocol over a 9 month period, but he was still unable to attend a full day of school (he was attending for a 3/4 day) and he was still experiencing occasional “crashes” from “over doing it” with parlor, low-grade fever, loss of appetite, & increased fatigue.  Our son had managed to get his functioning level to 80%, but we were looking for more.  Most patients arrive at the PPRC in really bad shape, many in wheel chairs or worse, so our son was on the higher end of the functioning spectrum upon arrival.  

Our good friend’s daughter (also with POTS) attended the Mayo PPRC program in Aug/Sept 2015.  She arrived at the PPRC with a feeding tube (she had lost 34 pounds as a 12-yr-old) and had to lie on the floor of the airplane to get to Minnesota.  Her turn-around was miraculous and she influenced our son to attend the program.  As a side note, their daughter was able to practice with her competitive downhill ski team for the winter 2015/2016 season.   

We witnessed a few other “miracles” while at the PPRC, including three young ladies with Complex Regional Pain Syndrome - two who had lost the use of a leg and one had lost the use of her arm.  The young lady with the bad arm is now able to ski competitively with her cross-country ski team.  The other two ladies found great success too - one is able to help work her family’s ranch in Montana and the other is back at school and doing great also (it was amazing to watch her progress from arriving at the program on a scooter to running on the treadmill by graduation).  There was also a young man with POTS who arrived in a wheelchair.  We watched his hard work and determination.  He was out of that wheelchair within the first week at the program.  

In the below blog entries, I discuss the building blocks to wellness (not a cure) from our experiences at the Mayo PPRC.  Some of the most interesting topics deal with (1) the vicious cycles of stomach upset and pain, which lead to starvation and more stomach upset and pain, (2) the concept of rewiring the brain called neuroplasticity,  and (3) the science behind the benefits of diaphragmatic breathing and relaxation, and (4) the importance of sleep, especially stage 3 sleep.  

At the beginning of our journey, we searched for a diagnosis, then we searched for a cure.  Although there is not a “cure” for POTS, we have found a protocol for full-life functionality despite chronic illness.  Even if our son does not outgrow the syndrome, he now has the tools to live a long, full, happy, and successful life.  

Please feel free to comment or add information that will help others in their quest.  

This section is just an intro, welcome, and update area.  AFTER THIS ENTRY, PLEASE START TO READ THE BLOG FROM THE BOTTOM UP - FIRST BLOG IS CALLED “GROUND ZERO - AUGUST 2014”.  Like other blogs, the most recent entries are on top.  Our story starts at the bottom.

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UPDATE - JUNE 8, 2017 - Today was our son’s last day of classes for his sophomore year of high school, although he still has final and regent exams over the next 2 weeks.  He had an amazing year - full-time school (including AP and honors classes) and participation in school sports throughout the entire year.  He just finished up his spring season of JV lacrosse and made it through 2+ hour practices and/or games for 6 days per week during the season.  Additionally, it has been almost 9 months (!!!!!!) since his last IV iron infusion.  His ferritin numbers are holding and his body continues to uptake his daily oral prescription iron.  He is still also taking one 5mg midodrine per day, which is a vasoconstrictor and helps with his circulation issues (which, in turn, helps his fatigue and brain fog).  We have come such a long way in the almost 3 years since he got sick.  We couldn’t be more thankful or appreciative of the Mayo Clinic, the Mayo Clinic PPRC, our cardiologist (Dr. Julian Stewart), and our hematologist (Dr. Oya Tugal), who introduced us to the wonders of IV iron infusions.  

UPDATE - FEB 28, 2017 - Today is the one year anniversary of our son’s graduation from the Mayo PPRC.  Wow, what a long way he has come since he contracted POTS 2.5 years ago!  He is playing on two hockey teams (JV school & club), taking a full course load at school and doing well, socializing with friends on the weekends, and he is looking forward to playing lacrosse in the spring.  He jokes and smiles all the time and we have our happy son back! We are truly indebted to and appreciative of the Mayo PPRC.  It changed our son’s life and it changed our lives.  

He is still maintaining on one 5mg midodrine per day and prescription oral iron.  His body is uptaking the oral iron even better than it did before and it has been 4 months since his last IV iron infusion.  He is due blood work in a month, but we hope to keep pushing his IV infusions further and further apart (although they are a God-send when his ferritin gets too low).  We are also completely appreciative of the IV iron infusions (when he needs them) and feel so lucky to be working with our hematologist.  Our son is now 6′ tall and 155 pounds. :)

UPDATE - SEPT 1, 2016 - It has been 7 months since we returned from the Mayo Clinic PPRC & just over 2 years since our son got sick.  Our son had a great summer!  He spent almost 6 weeks in California with my sister and her family (she has 3 boys).  They surfed and were active all summer.  We have tapered his medication (Midodrine) down to once per day and he continues with daily prescription oral iron.  It has been 3 months since his last IV iron sucrose (Venofer) infusion (he has his next blood work in 2 weeks . . . will determine next infusion date).  Although he is feeling tremendously better, his body will still not maintain adequate ferritin iron levels, which is why we supplement him with oral iron and continue with sporadic IV iron infusions when his levels get below a certain point.  The low ferritin levels contribute to his exercise intolerance & fatigue, which continue to be a factor, but are MUCH improved.  He also still suffers from heat intolerance, but that is also slowly improving a bit.  He continues to take frequent “movement” breaks when sitting for extended periods and figits around when standing to keep his blood moving.  He starts school this week and is carrying a full course load (with one study hall to rest during day).  He plans to play ice hockey & lacrosse for the school and is looking forward to a successful sophomore year.  Here are some photos from the summer:

Surfing in CA in July (our son on right):

Our son & daughter in CA in July:

Family surfing lesson in Long Beach, NY in Aug:

Hockey Helps Marathon (dad & son with ex-pro Benoit Hogue):

UPDATE - MAY 2016 - It has now been 3.5 months since we returned from the Mayo Clinic PPRC.  Last week was our son’s last week of the JV lacrosse season and he made it through successfully!!!!  :) The first week of practice back in early March was intense and demanding.  Jack was sick for most of the second week and we thought, “here we go again”, but our daughter was also sick with a virus that week and we have decided that he was sick with the same virus, instead of POTS sick.  We say that because he has not missed a day of school or a single practice since!  He struggled at practice only one day and sat out a few of the drills, but, in general, his level of activity in both sports and school is FULL PARTICIPATION! 

This coming August will mark two years since our son got sick, so 20 months ago.  When he first became ill, he was 5’3.5’’ and 105lbs.  He drew down to 95lbs and is now 5’10’’ and 150lbs – WOW. If you search the web for POTS success stories or Dysautonomia success stories, not much comes up.  The people who do claim success usually have secondary POTS and were able to find a cure for the primary illness.  Further, I get why people don’t claim success, because you are always holding your breath waiting for the symptoms to reappear. At Mayo, a past patient (who is now living a full life) addressed the class about his experiences at Mayo.  One of the mothers asked if he still had POTS.  He paused and said, “yes, I still have POTS if I stop to think about it, but I don’t think about it anymore”.  I think our son is approaching this “have-it-yet-don’t-need-to-think-about-it” level of health.  

Our son still has POTS (his pulse is still 90bpm when he stands up -- or even just sitting -- and if he stands still his pulse will go meaningfully higher), but his symptoms have improved GREATLY.  He is still on Midodrine, salt, water, exercise, and iron supplements.  BUT, he has great energy, his appetite is back to normal, AND he is not suffering from exercise intolerance. Additionally, we have tapered down his Midodrine dose by 1/3.  He would like to taper completely off this summer (we will see how things are going).  Additionally, our son’s body will now absorb iron orally and we have been supplementing his IV iron infusions with oral iron supplements.  This has allowed us to push his IV iron infusions further apart.  Before, he was going approximately every 5 weeks.  It has now been 11 weeks since his last IV iron infusion.  His iron levels are still deteriorating, but just at a slower rate with the added oral iron supplements.  He will probably need another IV iron infusion in the next several weeks (before final exams and regents).

I think anyone who has unexplained gut issues and has gone through the battery of tests without a diagnosis (plus anyone who gets lumped into the CFS/ME world) should get checked for POTS or at least do a poor-man’s tilt table test.  If you do have POTS, then it is imperative that you go on the salt, extra water, Midodrine or beta blockers, and exercise protocol AND, you need to get your Ferritin iron levels (not just your overall iron levels) & vitamin D levels checked. The best things we have done for our son where (1) going to Mayo Clinic AND (2) getting him Venofer IV iron sucrose infusions.  Jack’s Ferritin iron levels were in the high teens for months.  We were on an oral iron supplement, but his body was not absorbing the iron orally.  We read about a doctor in Dallas who had given Fereheme infusions to a few POTS patients with great results.  Fereheme has some adverse side effects, so we ended up getting Venofer iron sucrose infusions with a hematologist in Westchester, NY.  His Ferritin went from the high teens to 50+ and he felt much better within days (he could actually feel a difference on the day of the infusion!).  When we added the trip to the Mayo PPRC on top of the infusions, HE GOT HIS LIFE BACK!!!  

These photos are from his second to last game of the the season last week.  Our son is #1 in white:

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UPDATE - MARCH 2016 - Our son has been back at school full time for a month and half and is doing really well.  He made it through his first full week of lacrosse practices - 6 days in a row!  He hasn’t been able to play in 2 years.  

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UPDATE - FEBRUARY 2016 - Our son has been back in school full-time for 3 weeks since returning from the Mayo PPRC.  Additionally, he has been playing hockey -- both practices and games.  On a trip to FL for Feb break, he spent a lot of time golfing & swimming.  He & his hockey team participated in the play-offs at the end of February and here are some photos and a video:

Our son & his hockey coach several days after returning from PPRC:

Golf:

Swimming with his sister:

Our son is #4 (in center of photo) on the blue team:

There are thousands of PPRC success stories . . . we could be here all day.  Here are just a handful of them (aside from our son):

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 & told us about her).  This is her PPRC success story with Complex Regional Pain Syndrome. 

Success story with POTS - “Postural Orthostatic Tachycardia Syndrome (POTS) - Mayo Clinic” - https://www.youtube.com/watch?v=UhayhmbCzCU (4:57 min)

Note: Dr. Philip Fischer (in this video) is our doctor at the Mayo Clinic.

Success story with POTS - “Pediatric Pain Rehabilitation Center - Mayo Clinic” - https://www.youtube.com/watch?v=eonbqhUw-F8 (5:58 min)

Post Concussion Success Story - “Pain Rehabilitation Clinic (PRC) Testimonial - Mayo Clinic” - https://www.youtube.com/watch?v=bQsAKazyIIk (5:03 min)

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 program.  The rules below are the rules for success after the PPRC.  Following these rules can prevent patients from slipping back into their old behaviors.   

REASONS TO MISS ANYTHING:

There are only 5 excusable reasons to miss anything after the PPRC:

Fever over 102.8

Unconscious (not POTSy passing out)

Bleeding profusely

Protruding bone

Suicidal thoughts

These rules may seem draconian, but they are put into place for an important reason.  Acute (short-term) illnesses can be a slippery slope for patients with dysautonomia or other chronic conditions.  For every 24 hours in bed, there is a 1-3% loss of muscle strength that takes 2-3x the amount of time to regain.  As the patient deconditions in bed, they get more fatigued and have more pain (their chronic symptoms get much worse with deconditioning).  One or two days in bed to treat a short-term chronic illness can become a month back in bed for some chronically-ill kids.  They could end up right back where they started before the PPRC program.  Over time, loss of muscle mass = more fatigue.  Isolation = antisocial, which can lead to depression.  Isolation also means less stimulus, which leads to a shrinkage of the frontal lobes of the brain.  Smaller frontal lobes of brain mean more fatigue, sleep impairment, day/night reversal, post-exercise fatigue, & sickness behaviors.  It can be a horribly vicious cycle.  That’s where these strict rules come into play.  (NOTE: frontal lobe atrophy can be reversed with increased activity, outside stimulation, relaxation exercises, meditation, CBT, & social activities.)

GENERAL DAILY RULES:

No more medical workups for further diagnosis

No “pain behaviors” by either teen or parent (NO actions, verbal or nonverbal, that bring attention to the pain or symptoms.  This helps abandon the old neuropathways in brain to make them weaker & less important.)

Parent response to any pain/symptoms = warm neutrality (no pillow fluffing or punitive behavior by parent toward teen)

No disrespectful behaviors by teen toward anyone, especially parents

3 chores per day

1 hour daily homework

8.5-9.5 hours of sleep per night plus routine around it

Get self up in morning

Daily exercise

Adequate amounts of salt & water (and any medications)

Be independent & self-reliant

Faked bravery (put on brave face during day despite how you feel - both kids AND parents)

Attend social activities

Be on time

No naps

Attend therapy session once per week with counselor for Cognitive Behavior Therapy (CBT) for 6-12 months post graduation

Back to school full-time with 2 extracurriculars

In general, no A/P classes as these classes tend to put a lot of pressure and work on the students (and it is difficult to have moderation with these types of classes)

Suggested use of 20/20/20 rule when studying or homework or working - work for 20 minutes then stand up and walk 20 feet away and back for 20 seconds (if you can’t walk around, then change your focus and look 20 feet away for the 20 seconds), then begin your next 20 min of work, etc.

CONSEQUENCES:

--Given to teen if they are not following rules and functioning normally.

--These are not given as punishment, but to help the kids prioritize what’s important and to keep them healthy and functioning normally (which is important in order to develop and reinforce the new, healthy neuropathways in brain). 

--Examples could include grounding, extra chores, or removal of:

electronics

cell phones

makeup or hair products

car keys

privileges

bedroom door

The consequences listed above would be considered “level 1″ consequences. There should also be “level 2 or nuclear” consequences on the table as well.  The nuclear consequences would only be in situations where the patient will not continue on the program with level 1 consequences and he or she is slipping back physically and mentally into pre-PPRC conditions.  Nuclear consequences could include:  boarding school, going to live with grandma, getting rid of the family pet, etc.  :/

Consequences may seem unfair, but what are your options?  If your kid is going to be sick any way, do you want them at home in bed wasting away or do you want them out functioning normally in life?  And what’s the sweetener for functioning normally? When your kid is functionally normally, their pain and symptoms will fade away over time.  

WAYS TO STAY IN SCHOOL:

Slow down & moderation in day

Prioritize & plan ahead

Keep a steady pace

Revise expectations

Salty snacks & water

Positive self-talk / humor

Faked bravery (they put on a brave face and go on . . . despite pain or symptoms)

Diaphragmatic breathing and/or other relaxation techniques

BAD DAY PLAN:

Each teen is required to come up with a detailed “Bad Day Plan” because they are going to have them.  They have been given a “toolbox” of tricks for how to deal with stress, disappointment, social flubs, feeling lousy, homework, bad time management, etc.  Our son’s Bad Day Plan involves: breathing techniques, exercise, moderation but not missing anything, time management, socialization, adequate sleep, and a reward for himself for getting though it.  

RELAPSE PREVENTION:

The KEY PRINCIPLE of the PPRC is that you (1) function 100% on all the “have-to’s” in life, (2) moderate on the “want to’s” in life, and (3) you use the PPRC concepts to manage your symptoms and emotions regardless of how you feel.  In order to be successful after leaving the PPRC, you need to have the correct mindset.  When you have pain or symptoms (old or new), you should be thinking “what can I do to manage this?”, regardless of what “this” is.  (Usually, prior to the PPRC, people have been focused on how someone or something else can fix this.)

RECIPE FOR RELAPSE-FREE FUTURE: 

daily structure (even on weekends)

daily relaxation techniques

daily exercise (especially with POTS)

adequate nutrition and hydration

keep in touch with other PPRC patients and encourage each other

see your counselor weekly for the first year

sleep hygiene

keep your focus on functioning well

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 because of POTS.  The blood vessels and nerves that are supposed to get blood to the digestive track are broken and don’t work correctly.  It becomes a vicious cycle.  Nausea = not eating (or only eating certain things . . . for example, at one point our son would only eat 3 things).  Not eating (or limited eating) = poor nutrition, weight loss, & disordered eating.  

This is the typical cycle for POTS kids:  they stop or slow down eating due to bad GI issues.  As they get less nutrition, their GI issues act up more.  And not taking in proper calories and nutrition causes . . . guess what?  More POTS-like symptoms!  Increase heart rate, poor blood flow, stomach pain, & fatigue.  So what do the kids do?  They lie down, get more deconditioned, and feel even worse.  As this cycle continues over time, many of the patient’s POTS symptoms can become magnified (or new symptoms may appear) due to the effects of malnutrition, starvation, and deconditioning. 

What they are finding at the Mayo is that food is the answer.  The approach that they take?  EAT!  And eat some more.  Not eating, or eating a restricted diet, becomes another “pain behavior”.  The way you train your brain (create new neuropathways) and tell your body to deal with food is to fill yourself with food.  (And the deep breathing helps too.)  Proper teenage eating is “normal” teenage eating.  They do not put the kids on a limited “Gastroparesis Diet” because they can’t make the new neuropathways in their brain on a limited diet.  They are finding at Mayo that the kids with POTS are experiencing huge improvements with their GI issues when they just start eating normally again.  Even if it’s awful for them at first.  They are telling their bodies to stop the cycle.  Not that eating clears up POTS.  Not that easy.  But, eating clears up the POTS-like symptoms that get added on top of POTS due to starvation & malnutrition.

Example of the Effects of Starvation:

During the lecture on nutrition at the PPRC, we were given an example of a study done in the 1940s on the effects of starvation, dieting, and malnutrition called the Minnesota Starvation Study.

The study was led by one of the world’s most renowned scientists, Ancel Benjamin Keys, Ph.D., popularly known for inventing K-rations that kept our soldiers alive during World War II.  

In the 1940s, when starvation was widespread throughout war-torn Europe, little was known about the effects of human starvation or how to best refeed people who’d suffered from such deprivations. Dr. Keys led the first scientific study of calorie restrictions for the War Department. The researchers wanted to understand the medical needs facing millions of starving war victims and how best to renourish and rehabilitate them to health after the war. 

The 40 young male participants were carefully selected among hundreds of volunteers for being especially psychologically and socially well-adjusted, good-humored, motivated, well-educated, active and healthy. They were put on calorie-restrictive diets of about 1,600 calorie/day, meant to reflect that experienced in war-torn regions, for 3 months. They dieted to lose 2.5 pounds a week to lose 25% of their natural body weight. The calories were more generous than many weight loss diets prescribe today!

During the 3-month nutritional rehabilitation period after the diet, the men were randomly assigned to various nutritional regimens, with differing levels of calories, proteins and vitamins. The men lived at the lab and everything they ate and did was closely monitored, as was their health with a battery of tests. Daily exercise was walking about 3 miles a day. 

As the men lost weight, their physical endurance dropped by half, their strength about 10%, and their reflexes became sluggish — with the men initially the most fit showing the greatest deterioration. The men’s resting metabolic rates declined by 40%, their heart volume shrank about 20%, their pulses slowed, and their body temperatures dropped. They complained of feeling cold, tired and hungry; having trouble concentrating; of impaired judgment and comprehension; dizzy spells; visual disturbances; ringing in their ears; tingling and numbing of their extremities; stomach aches, body aches and headaches; trouble sleeping; hair thinning; and their skin growing dry and thin. They had every physical indication of accelerated aging.

But the psychological changes that were brought on by dieting, even among these robust men with only moderate calorie restrictions, were the most profound and unexpected. So much so that Dr. Keys called it “semistarvation neurosis.” The men became nervous, anxious, apathetic, withdrawn, impatient, self-critical with distorted body images and even feeling overweight, moody, emotional and depressed. A few even mutilated themselves, one chopping off three fingers in stress. They lost their ambition and feelings of adequacy, and their cultural and academic interests narrowed. They neglected their appearance, became loners and their social and family relationships suffered. They lost their senses of humor, love and compassion. Instead, they became obsessed with food, thinking, talking and reading about it constantly; developed weird eating rituals; began hoarding things; consumed vast amounts of coffee and tea; and chewed gum incessantly (as many as 40 packages a day). Binge eating episodes also became a problem as some of the men were unable to continue to restrict their eating in their hunger.

The last part of the Minnesota Starvation Study revealed perhaps the most important effects. When the men were allowed to eat ad libitum again, they had insatiable appetites, yet never felt full. Even five months later, some continued to have dysfunctional eating, although most were finally regaining some normalization of their eating. As they regained their weights, their suppressed metabolism and energy levels returned, although even three months after ending the diet none of the men had yet regained their former physical capacity.

While it seemed the men were “overeating,” Dr. Keys discovered that their bodies actually needed inordinate amount of calories for their tissues to be rebuilt.  In other words, they weren’t really “overeating,” it was a biological, normal effect of hunger and weight loss. The men regained their original weights plus 10%. The regained weight was disproportionally fat, and their lean body mass recovered much more slowly. With unlimited food and unrestricted eating, their weights plateaued and finally, about 9 months later, most had naturally returned to their initial weights without trying — giving scientists one of the first demonstrations that each body has a natural, genetic set point, whether it be fat or thin. 

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 stress: 

TED Talk - “Kelly McGonigal: Making Stress Your Friend” - https://www.youtube.com/watch?v=RcGyVTAoXEU (14:28 min)

TED Talk - “Happy Brain: How to Overcome Our Neural Predispositions to Suffering by Amit Sood, MD” - https://www.youtube.com/watch?v=KZIGekgoaz4 (18:06 min)

“A Very Happy Brain” - https://www.youtube.com/watch?v=GZZ0zpUQhBQ (4:23 min)

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.  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, you slow down your heart rate, lower your blood pressure, and open up your blood vessels for better blood flow to all parts of body, thereby improving circulation, reducing brain fog, and helping digestion.  These techniques are also useful in helping control and reduce many pain or symptom signals in the brain.  Diaphragmatic breathing is especially useful in controlling nausea.

Diaphragmatic Breathing:

Diaphragmatic breathing is deep/slow breathing, instead of shallow/rapid breathing.  With shallow/rapid breathing or “chest” breathing, you are only filling 30% of your lung capacity.  Our bodies are not equipt for shallow/rapid breathing.  This means, in order to chest breathe, we have to use our shoulder, chest, back, and neck muscles to do it.  This causes extra muscle tension & fatigue in those areas (where many of us feel stress!).  Our bodies are really designed for deep/slow diaphragmatic breathing.  Ever notice a sleeping baby breathe . . . with its tummy going up and down slowly??  That’s how our bodies are designed to breathe.  Diaphragmatic breathing fills 80% of lung capacity! 

How do you do diaphragmatic breathing?  You pretend that you are filling a balloon in your stomach (keeping your chest still) & breathe in and out slowly.  

Diaphragmatic breathing is important because it helps push up the parasympathetic nervous system (”rest & digest”) & thereby bringing down the overtaxed sympathetic nervous system (”fight or flight”).  When kids’ have autonomic dysfunction, their “fight or flight” response is in overdrive causing increased adrenaline & other hormones, increased heart rate, increased blood pressure, increased anxiety, blood vessels constriction, and blood transfer to big muscles, halt of digestion, increased sensitivity to pain, and decreased immune system.  This is called the “stress response” and is designed to help us in survive in very stressful or dangerous situations.  With dysautonomia, even regular stress can cause this same “stress response”.  Staying more relaxed during activities & day will help with fatigue & pain.  Diaphragmatic breathing slows down your heart rate, lowers your blood pressure, and opens up your blood vessels for better blood flow.

Chemistry Behind Diaphragmatic Breathing: 

Red blood cells pick up oxygen molecules in lungs and carry them throughout body.  On the flip side, they pick up carbon dioxide “waste” molecules for elimination.  With shallow breathing, the red blood cells pick up oxygen molecules with a “sticky bonds” instead of a regular bonds.  Because these bond are “sticky”, the RBCs cannot properly distribute the oxygen molecules throughout the body or, on the flip side, pick up carbon dioxide for waste elimination.  On the other hand, with diaphragmatic breathing, there is proper bonding between RBCs and oxygen molecules.  This means better oxygenation of body leading to less fatigue & inflammation.  

Mayo Study on Effects of Diaphragmatic Breathing: 

Two groups of people - Group 1 = normal health & Group 2 = POTS patients.  For both groups, the study involved taking baseline measurements (heart rate, blood pressure, & breathing rate), then subjecting all participants to a stressor (in this case, they used a cold pressure test . . . kind of like sticking your hand in an ice bucket), then taking those same measurements again, then removing the stressor and taking final set of measurements.  For Group 1 (normal health), all participants were at a “normal” baseline level, then their measurements (heart rate, blood pressure, breathing rate) all spiked under the stressor, then returned to “normal” baseline upon removal of the stressor.  For Group 2 (POTS patients), their baseline measurements were all elevated (compared to Group 1), then spiked from there with stressor, and came down upon removal of stressor . . . but only to their previous baseline (which was MUCH higher initially than the normal health participants.  This is further evidence of POTS patients’ bodies being in a constant state of “stress response”.  THEN BOTH GROUPS WERE ASKED TO DO DIAPHRAGMATIC BREATHING 3X PER DAY FOR 10 MIN FOR A TOTAL OF 2 WEEKS.  Then they were all retested again for baseline/stressor/baseline.  Results?  Both groups benefitted, but was what remarkable is that Group 2′s baselines started much lower than before and didn’t go as high under stress.  Remarkable.  The diaphragmatic breathing had decreased their baseline & stressor readings by pushing up their parasympathetic nervous systems thereby decreasing their chronic “stress response”.

Here at the PPRC, they teach the kids to breathe through their noses only because they want them to be able to utilize breathing in a stealth manner as a relaxation (or anti-nausea or other symptom) technique, even if surrounded by other people (for example, at school or a social activity).

Daily Dose of Diaphragmatic Breathing: 

3x per day for 10 min (or cumulative total of 30 min per day).  The breathing can be done while performing other activities as well . . . doesn’t have to be a quiet, devoted sit-down.  Grab 5 min here and 5 min there to get to your 30 min goal per day.

See video for more info: “Anxiety & Stress Relief with Diaphragmatic Breathing” - https://www.youtube.com/watch?v=pKZCGVSxmas (19:52 min).

Relaxation:

Pain causes stress and stress intensifies pain.  The PPRC teaches the kids coping strategies to break the pain/stress cycle.  Relaxation reduces muscle tension, reduces anxiety, & allows a person to feel refreshed.  The kids learn several relaxation techniques including progressive muscle relaxation (where they tighten up muscles throughout body and then relax them), guided imagery relaxation, meditation, and positive self-talk.  Relaxation is the key to controlling symptoms and decreasing the “pain/symptom” areas of the brain. 

Please see the following videos:

“How Does Meditation Change the Brain? Instant Egghead #54” -https://www.youtube.com/watch?v=q0DMYs4b2Yw (2:23 min)

“The Benefits of Meditation - Jon Kabat-Zinn” - https://www.youtube.com/watch?v=wjXXvtGEZQQ (2:49 min)

“Meditation 2.0: A New Way to Meditate” - https://www.youtube.com/watch?v=WZ64ch2hLhI (4:56 min)

Biofeedback:

The kids learn biofeedback through the aid of different computerized programs/instruments.  These instruments are used to measure their heart rates, breathing rates, and muscle tension.  The kids learn how to control these predominately involuntary processes through controlled deep breathing and relaxation.  (The kids also do daily biofeedback, so they can see results in their heart rate and brainwaves on a monitor while they practice their breathing.)  The kids learn how to relax & breathe so that they can practice those techniques while performing daily activities.

Distraction:

Distraction is a good way to get people’s focus away from their pain and/or symptoms.  There was a study at Mayo where people’s brains were scanned as a baseline.  Then the participants were put under a cold pressure test (as a stressor) and rescanned.  The doctors were able to see and measure the areas of the brain affected by stress/pain.  Then, while still enduring the cold pressure test, the participants were given flashcard tests that required them to pay attention, think, and answer questions . . . for the whole deck.  After the deck was finished, the patients’ brains were scanned for a third time.  Remarkably, although still enduring the cold pressure test, those pain/stress areas of the brain were greatly decreased with distraction!  Bottom line, when people talk about or focus on their pain/symptoms, those areas of the brain flare up.  With distraction (of any sort . . . including just normal functioning during the day), those pain/symptom areas of the brain can be greatly reduced.  

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 normal part of life.  Our bodies are designed to react & “rise to the occasion” to meet and be prepared for stressful situations.  Our autonomic nervous systems are responsible for (1) initiating the stress response to be alert & aware and (2) initiating the relaxation response that follows to rest & revitalize.  The autonomic nervous system is divided into 2 parts - the sympathetic nervous system (which initiates the stress response - “fight or flight”) and the parasympathetic nervous system (which initiates the relaxation response - “rest & digest”).  The body’s stress response causes muscles to tense up, pupils to dilate, increased blood pressure, increased heart rate, blood to large muscle groups (and away from smaller muscles & digestion), & a release of various stress hormones.  When the sympathetic nervous system is cranked up, the parasympathetic system is down.  It is like these two parts of the autonomic nervous system are on a pulley system - if one is up, then the other is down.  By pushing up one, we can pull the other down.  

The balance between the sympathetic & parasympathetic nervous systems gets disturbed by chronic stress.  Central sensitization is a condition of the nervous system that is associated with the development and maintenance of chronic pain. When central sensitization occurs, the sympathetic nervous system goes into a chronic state of “fight or flight”.  Chronic elevations of stress hormones & physiological stress reactions cause wear & tear on the body, as well as disease.  Additionally, the autonomic nervous systems in patients with dysautonomia (or autonomic nervous system dysfunction) are broken & don’t respond properly . . . so the bodies of kids with dysautonomia are in constant states of “flight or fight” with chronically revved up sympathetic nervous systems & ineffective parasympathetic nervous systems (very little or no “rest & digest”).  The parasympathetic branch that provides the relaxation may have become exhausted and unable to stop the stress response.  Various self-management strategies can strengthen the function of the autonomic nervous system and increase resilience to stress.  

The PPRC gave us a good analogy for understanding the relationship between the sympathetic & parasympathetic nervous systems to our children’s chronic pain or symptoms.  Imagine your child as a fish in a fishbowl.  This fishbowl has cracks in it, which are causing the bowl to lose water.  These cracks represent pain, POTS, fatigue, numbness, Chronic Regional Pain Syndrome, anxiety, stress, headaches, peer drama, headaches, relationship problems, stomach pain, etc . . . you get the idea . . . anything that is causing stress on your child.  While you may be able to fix some of the cracks, there will be other cracks that can’t be repaired.  So, the idea is to keep the water level high enough to keep the fish alive despite continuing to lose water through some of the cracks.  So, the PPRC teaches us how to “add” water to the bowl and keep the fish alive.  What are some things that help add water to the bowl (or boost the parasympathetic “rest & digest” nervous system)? In no particular order:

confidence through achieving and functioning normally

fun / leisure activities

socialization / peers (this is #1 importance for kids at this developmental stage!)

deep (diaphragmatic) breathing

daily exercise

sleep hygiene (8.5-9.5 hours per night and routine around it)

nutrition

spirituality (not necessarily religious . . . anything that fills your soul)

So, in summary, the program at the PPRC doesn’t focus on getting rid of cracks, but on adding water to the bowl to keep the fish alive.

Our bodies have chemicals that intensify pain signals & chemicals that inhibit pain signals.  Research suggests that with central sensitization the increase in the excitability of neurons within the central nervous system results in an abnormal enhancement of pain & general hypersensitivity.  With central sensitization, these pain-signal chemicals become imbalanced, which results in a much intensified pain signal.  For example, in a normal body, a finger stick at the doctor sends pain signals through the nervous system and tells the brain that it is a level 3 pain.  With central sensitization, the pain signals from the finger prick get amplified on way to the brain so the brain thinks it’s a level 5 pain (when, in reality, it’s only level 3).  

Aside from pain-signal amplification, sensitization may also have neuroanatomic spreading or cross sensitization.  Neuroanatomic spreading is when a pain response may not follow expected pathways & new areas of pain may appear.  This also explains limbic dysfunction, such as problems with mood, attention, fatigue, appetite, & sleep.  Cross sensitization is when non-painful stimuli, such as stress or an emotional event, can trigger a pain or POTS response.  The following is a list of Central Sensitivity Syndromes that have overlapping symptoms:

POTS

Fibromyalgia / Myofascial Pain

TMJ

Migraines / Tension Headaches

IBS

Interstitial Cystitis

Chronic Pain Problems

Fatigue / Chronic Fatigue

Depression / PTSD

Restless Leg Syndrome

Multiple Chemical Sensitivities

Chronic Itching

For more in depth information on central sensitization, please see following video from the Mayo Clinic Pain Rehab Center in Florida: “Dr. Sletten Discussing Central Sensitization Syndrome” - https://www.youtube.com/watch?v=8defN4iIbho (13:21 min).

Symptom-focused behaviors include anything that people say or do to communicate their symptoms.  A focus on symptoms signals the brain to chemically intensify the symptoms. The amplified-pain neuropathways in the brain get stronger and stronger with repeated use.  But wait!!!!!  Because our brains are neuroplastic, we can rewire the brain to use new healthy neuropathways instead & abandon the old, pain neuropathways.

Neuroplasticity:

In our brains, neurons fire and synapse with one another and repeated signals create memory pathways.  MRI studies have shown that the pain center in the brain actually lights up when one is thinking about pain vs. being distracted from it.  Over time, a pain or symptom neuropathway that should be the size of a dirt bike path in the brain can become an 8-lane super highway from continued use (by focusing on the pain or the symptoms).  Fortunately for us, our brains are neuroplastic and we can grow new neuropathways to rewire our brains.  By NOT talking about or focusing on the pain/symptoms, we tell our brain that those pain/symptom neuropathways are not important and they shrink down (go from super highway back to bike path).  By functioning normally despite pain and/or symptoms, we grow new, healthy neuropathways, which will strengthen over time into 8-lane super highways.  

Please see the following videos:

“Neuroplasticity” -  https://www.youtube.com/watch?v=ELpfYCZa87g (2 min) 

“Neuroplasticity Made Simple” -  https://www.youtube.com/watch?v=tJ93qXXYRpU (1:22 min)

IN SUMMARY:

Pain medications are NOT the answer because they (1) only dampen the pain signals, (2) DO NOTHING toward healing the source of the pain, and (3) can lead to addiction and/or hyperallegisia (greater pain in the long run).  Certain blood pressure medications can stabilize POTS symptoms.  For example, our son is on a vasoconstrictor medication called midodrine, which has been very helpful with his POTS symptoms. (Note: sometimes certain types of antidepressants can also be helpful for pain, mood, & sleep enhancement.  I am not, however, going to discuss this in my blog, as our son has not needed antidepressants and we don’t have any experience with them. You should consult your doctor for more information.)

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 may never completely go away

no visible injury

hurt does NOT = harm

pain is NOT a reliable signal

warning signal is broken

Terminal Pain

Cycles of Chronic Pain:

The program at the PPRC is designed to help patients learn how to unwind the cycles of pain.  

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 arrive at the PPRC: no more talking about the pain.  At all.  So, I do not know, and have not known, how our son is feeling since early January 2016.  Talking about pain is a “pain behavior”.  MRI studies have shown that the pain center in the brain actually lights up when one is thinking about pain vs. being distracted from it. Fortunately for us, our brains are neuroplastic and we can grow new neuropathways to rewire our brains.  By NOT talking about or focusing on the pain/symptoms, we tell our brain that those pain/symptom neuropathways are not important and they shrink down.  By functioning normally despite pain/symptoms, we grow new, healthy neuropathways.  The kids at the PPRC learn how to make the fundamental shift in thinking from “how I feel?” to “how well do I function?”.  Feeling better (decrease in pain & symptoms) is a great side effect of functioning better.  Functioning better is the goal.  Other pain behaviors besides talking about pain: thinking about pain, bandages, ice packs, compression stockings (what POTS people wear to help constrict blood flow), pain medications, and anything one would do or avoid doing because of the pain.  So then, not going to school becomes a pain behavior, sitting around for hours watching Netflix becomes a pain behavior, being grumpy is a pain behavior, saying no to activities is a pain behavior.  Parent pain behaviors are a no-no too.  This includes posting about your child’s pain/symptoms/doctor visits/etc. in social media.  I do not post (and never have) anything about my son’s illness in social media (at his request) and this blog will be the last time that I type anything about his pain and/or symptoms.  Upward & onward - we are completely done talking about it.

PHYSICAL THERAPY - A WORKING autonomic nervous system is responsible for automatic contraction and expansion of the blood vessels. POTS patients have blood flow issues due to IMPAIRED autonomic nervous systems and they therefore have to get blood flow going by different means . . . EXERCISE.  Not just for general health, but in the case of this illness, exercising is how you will get your blood to flow.  Blood flowing = blood to your brain, blood to your extremities, blood to your organs, eyesight and hearing improved, less nerve pain, less brain fog, less fatigue. Basically all things POTS get better. Additionally, building stronger muscles (weight training) and a bigger heart (cardio) are key for better blood circulation in order to pump blood efficiently around the body.  In PT, they learn a consistent DAILY exercise routine - 30 minutes breathy & sweaty cardio plus 30 minutes of another activity.

OCCUPATIONAL THERAPY  — Learning moderation, scheduling & tracking of daily living & activities, energy-saving techniques, proper body mechanics, & time management.  Kids are in one hour of OT daily.  Boy, are they thorough.  They don’t just teach this stuff to the kids; they follow up on every single detail — tailored for each child.  The primary focus is on learning BALANCE IN LIFE between self-care, work, & leisure activities.  Self-care includes things like sleep hygiene, personal grooming, exercise, nutrition, relaxation, & positive self-talk.  Work encompasses school, homework, volunteer work, chores, and/or job or other responsibility.  Leisure includes passive leisure activities (reading, TV, video games, crafts), active leisure activities (sports, shopping, bowling, hiking, biking, etc), and social leisure activities (friends, family, texting/phone, extracurriculars).

RELAXATION — Autonomic Dysfunction causes increased heart rates, increased blood pressure, shortness of breath, stomach aches, anxiety and an imbalanced release of adrenaline, cortisol, and other hormones due to an overactive “flight or flight” response by their bodies.  The kids learn a routine of diaphragmatic breathing (deep breathing so that your belly feels like it’s filling up a balloon), which greatly reduces nausea as well, 3 times a day for 10 minutes.  Why is breathing so important? Because it pushes up your parasympathetic (”rest & digest”) nervous system, which brings down the overworked sympathetic (”flight or flight”) response.  It also properly oxygenates your entire body (see more extensive blog entry on diaphragmatic breathing).  The kids also do daily biofeedback, so they can see results in their heart rate and brainwaves on a monitor while they practice their breathing.  They also learn progressive muscle relaxation where they tighten up muscles throughout body and then relax them.  Relaxation is the key to controlling symptoms and decreasing the “pain/symptom” areas of the brain.

MODERATION — Lots of it.  This is not the kind of moderation where you cancel going to that party last minute because you feel so sick.  None of that anymore.  Moderation means planning out ahead what will work for your energy level and what won’t.  For instance, they recommend no AP classes in high school.  POTS kids just don’t do well with long hours of homework and extra pressure.  Moderation can also come in the form of knowing ahead of time how much physical exercise you can do, or how late you can stay up – if you’re going to get all 8.5-9.5 hours of required sleep each night.

SLEEP HYGIENE - Sleep hygiene is very important as many POTS patients have big insomnia issues.  Sleep efficiency can lead to a more restful night and an active day.  There are 3 stages in the sleep cycle and you cycle up and down through these 3 stages many times during the night.  Stage 1 is light sleep where you awaken easily, then stage 2, then stage 3, which is your deep, restorative sleep.  Stage 3 is the most important part of the sleep cycle because this is when your body rests and repairs itself.  Then you go back through stage 2, then stage 1 again, and back through them again and again. REM (dream) sleep happens close to stage 1, which is why you can awaken easily from a dream (and can remember them).  Over time, if you spend too much time in bed sleeping and napping in small spurts throughout the day, you never get to stage 3 sleep (just stages 1 & 2) so you never get the important restorative sleep.  Also, all this day sleeping can make it very difficult to sleep at night.  This is why napping all day can lead to chronic tiredness over time because there’s no restorative sleep.  Key points here: 

8.5-9.5 hours of sleep per night (7.5-8 for adults)

have bedtime routine and winding down time

no naps

no screens 30 min before bed

keep same sleep/wake schedule every day (and don’t vary by more than 1 hour on weekends)

STRESS MANAGEMENT TECHNIQUES — Pain causes stress and stress intensifies pain.  The PPRC program teaches strategies to break the pain/stress cycles including (to name a few): diaphragmatic breathing, relaxation techniques, meditation, biofeedback, positive imagery, diversion/distraction, positive self-talk (”I will make it through this day” and “I know I am strong enough” vs. “I can’t do this/it’s too hard”), use of humor, goal-setting, & keeping to a schedule.  A separate one-hour class is taught for each one of these techniques listed here — with exercises and role-playing (parents participate in all these as well). 

BONDING & SOCIALIZATION  -- Many of the chronically ill teens at the PPRC have been isolated at home for months or years due to their illnesses.  Isolation can lead to depression and, developmentally speaking, interaction with one’s peer group is WAY more important at this developmental stage than interacting with parents.  Not having a peer group can further contribute to depression.  All the kids re-learn socialization at the PPRC through all-day interaction at the program and additional, mandatory social activities on nights and weekends.  They also form life-long bonds with other kids who understand what they have been through.  This is huge.  Most of the kids had never met anyone else with their disease and have felt very alone.  These kids become a big support group for each other.  Bonding and socialization are key components to improvement of pain and symptoms and this is why all the kids are required to get back to school full-time on first day after the program.  (A full day of school also keeps them moving and active.)

MEDICATIONS - There is a “Chemical Wellness Day” at the PPRC to provide information on the benefits and risks associated with the various classes of medications used in chronic pain conditions.  This is important because many kids who arrive at the PPRC are medicated through the roof on pain meds. Studies have shown that long-term use of pain medications (opioids) are ineffective for chronic pain and can often times lead to greater pain in the long run (hyperallegisia), as well as addiction.  Additionally, long-term use of anti-anxiety medications (benzodiazoines), like xanax & valium, can also lead to addiction & greater anxiety over time.  (In fact, no doctors at the Mayo Clinic are even allowed to prescribe Xanax.)  As appropriate, the PPRC tapers kids off (or greatly reduces) the use of any pain/anxiety medications.  

EMOTIONAL IMPACT OF CHRONIC PAIN - For the kids, developing an awareness of the emotional impact of their chronic pain IS HUGE.  There is not a child (or parent) at the PPRC who has not been severely impacted — not only from the chronic pain and symptoms, but also from the result of not being believed for so long and running around appealing to anyone who would listen that there was something very wrong.  We see tears about this with many kids, as well as parents.  We are helped to recognize all the different ways that our whole family’s lives have been altered by our children’s chronic pain & given strategies to right the ship.  The basic areas they cover on this topic are: exploration of grief and loss, anger management, how self-esteem has been impacted, changes with interpersonal relationships, resentment & forgiveness, getting back to “regular life” (regaining activities & relationships that have been lost . . . both kids & parents), and relapse prevention.

ANXIETY -- Many kids who enter the PPRC suffer from anxiety due to living their lives with chronic pain or symptoms (and the feelings of hopelessness that surround chronic illness).  For example, many of the kids have anxiety about trying to get back to school full time due to their conditions.  The PPRC has a process to expose the kids to how a full day of school will be (that’s why the days are very full, structured days).  Additionally, any fears of socialization get addressed with all-day peer interaction & evening/weekend social activities.  Many of the kids who have been isolated for months/years have to relearn socialization.  The kids build their self-confidence through making it through a full-day of activities plus social activities.  This increased self-confidence lowers their anxiety around these (and other similar) activities.  Once they get home and get immediately back to full-time school, they get even more self-confidence from making it through school.  This self-confidence gets stronger and stronger as they continue to stay in school & attend extracurricular/social activities with their peers.

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.

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 these body functions are out-of-whack.  

Common symptoms include: dizziness, brain fog, syncope, pallor, fatigue, stomach pain/nausea/diarrhea, vision changes, increased heart rate, fainting, headaches, feeling hot or cold, sweating (lots), chest pain, weakness in legs, color changes in legs, and mood changes.  

STATISTICALLY, WHO ARE AUTONOMIC DYSFUNCTION PATIENTS?

2/3 girls & 1/3 boys 

Usually after an illness or injury 

Caucasian 

High achievers/perfectionists 

Flexible or double-jointed (many also have Ehlers-Danlors Syndrome or EDS)

Many teens outgrow autonomic dysfunction by their late teens or early twenties.  

MAIN PROBLEM - BLOOD FLOW & VESSELS ARE BROKEN/IMPAIRED

Signals telling your blood vessels to loosen & contract aren’t doing their jobs.  

Blood pools in different parts of your body & circulation slows down.

Causes the symptoms outlined above.  

HOW DO WE GET BLOOD FLOWING AGAIN & HELP SYMPTOMS?

“STEPS”

Salt 

Take in Fluids 

Exercise 

Prescription Medications 

Sleep

Eat salt & take in fluids - Add as much salt as you can to everything & drink 2-4 liters of fluids per day (2 liters of which need to be water).  Two liters = 64 oz or 8 cups.  Avoid caffeine & alcohol as they can be dehydrating.  The extra salt & fluids help keep your blood volume up.  

Exercise - 30 min breathy & sweaty cardio plus 30 minutes other activity EVERY DAY.  The exercise is KEY because it gets blood flowing by squeezing blood vessels & improving circulation. Exercise should be increased gradually toward this goal.  The benefits of daily exercise are: 

Increased energy & stamina

Retrains muscles to improve blood flow

Decreases pain & fatigue 

Revs up heart to improve circulation

Helps you sleep better at end of day

Body releases endorphins (”happy hormones”)

Cardio exercise is the absolute key to recovery.  IF YOU DON’T PUSH IT, YOU’LL NEVER GET PAST IT.  If you made a pyramid diagram of the important parts of this protocol, exercise would be the base, then salt/fluids, then medication.

Sleep

8.5-9.5 hours per night

Keep same sleep/wake hours every day and don’t vary sleep/wake times by more than 1 hour on weekends

No naps

Have bedtime routine & winding down time

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 tasks become easier and patients will be able to do more despite pain/symptoms.

--Exercises are designed to help decrease fear of movement that can be more debilitating than the pain itself.

STRESS MANAGEMENT & RELAXATION:

--Stress & pain have huge effect on each other - in short, pain cause stress and stress intensifies pain.

--Program utilizes coping strategies to break the pain/stress cycle.  Coping strategies are numerous and the stress management classes provide a comprehensive overview of the strategies.

--Relaxation is one of the most common coping strategies for managing stress.  Relaxation reduces muscle tension, reduces anxiety, increases self-control, and allows a person to feel refreshed.  The program presents a number of different forms of relaxation and encourages daily practice.

OCCUPATIONAL & RECREATIONAL THERAPY:

--Recreational therapy is focused on restoring social and leisure activities that have diminished due to chronic pain/symptoms. 

--Goal of occupational therapy is to create a balance between school, self-care, & social/leisure activities.  Focus is on learning techniques that increase the control a person has over activities of daily living, as well as helping to increase independence when performing activities.  

BIOFEEDBACK:

--Provides information about how physiological processes in the body can be negatively affected by chronic pain/symptoms. 

--A computerized instrument is used to measure and increase a patient’s awareness of predominantly involuntary physiologic processes such as breathing rate and muscle tension.  Biofeedback then aids the patient in learning how to increase control over these processes and strengthens the ability to maintain control while engaged in daily activities.  

SLEEP HYGIENE:

--Chronic pain can have a significant impact on sleep.

--Sometimes managing pain by spending time in bed or taking naps can lead to insomnia.

--Because sleep plays an important role in how one manages daily activities, chronic pain/symptoms, and overall mood, the program emphasizes assessment and education of sleep hygiene techniques.  Sleep efficiency can lead to a more restful night and an active day.

EDUCATION & GROUP SESSIONS:

--Group sessions are an integral part of the program and are designed to help patients recognize and deal with negative changes and emotions, improve relationships, and become more effective at managing their pain.

--Group sessions are a combination of informal discussions about how lives have been affected by chronic pain and formal lectures on how to effectively deal with pain.

--Sessions focus on a particular theme, pattern of behavior, or area of learning, such as: Stress Management, Anger Management, Assertive Communication, Perfectionism & Unrealistic Expectations, Cycle of Chronic Pain/Symptoms, Planning for a Difficult Day, & Personal Responsibility.

PARENT PROGRAM:

--Chronic pain/symptoms affect the whole family and program offers programming for families to gain a better understanding of chronic pain/symptoms and ways to respond more effectively.

--Parental participation indicates a willingness to learn how to assist your child toward better management of their chronic symptoms.

--Families learn better ways to respond to chronic pain/symptoms, as well as learning techniques to care for themselves. 

--Families learn benefits of using a neutral response to pain behaviors instead of an overly care taking or punitive response.

--Parents meet separately and with their child in groups that enhance communication, encourage limit setting and decrease the focus on the pain and pain behaviors.

MEDICATION MANAGEMENT:

--Often long term use of opioid medications do little to relieve chronic pain and may cause debilitating side affects that limit one’s functioning and mobility even greater.

--PPRC has a conservative approach to the management of medications.  The team works with each patient individually to eliminate or reduce the use of analgesic medications as appropriate.

--Medication reduction has been found to be a successful component of the program.

--Group classes equip patients and parents with medication information on the benefits and risks associated with the various classes of medications used in chronic pain conditions. 

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 saw more than 10 different doctors before diagnosis: 27% (8% say more than 20 doctors).

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 and now your child is medicated through the roof.  For POTS patients, maybe you feel like you’ve already tried all the traditional POTS protocols and they haven’t helped.  

Please don’t stop reading my blog.  Have an open mind.  Read to the end.  You don’t have anything to lose.  

The program is WAY more than just enforcing traditional POTS protocols - the neuroplasticity (rewiring of the brain), relaxation, & the socialization factors are everything.  These kids push each other to succeed and they witness unbelievable achievements.  

Please hang in there with me -- I’ll get to everything.  

According to the Mayo, if you and your family are considering admission to the PPRC, please ask yourself these questions:

--Is my life focused on pain/symptoms and what I am NOT able to do, rather than what I AM able to do in spite of the pain/symptoms?

--Am I missing school and social events due to may pain/symptoms?

--Are my doctors telling me there is nothing further they can do to relieve the pain?  Do they tell me that I need to learn to get on with my life?

--Am I truly concerned about the long-term effects of taking pain medications?

--Is my family’s well-being affected because of my chronic pain/symptoms?

--Is my recovery from injury or illness taking much longer than my doctors or I expected?

--Am I not able to commit to social events with family or friends because my pain/symptoms may be higher that day?

Front entrance:

Chapel (more like cathedral!):

Meditation Room:

An upstairs family waiting area with views of the city:

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 Dysautonomia.  

On my first day at Parent Group, one of the head doctors had us go around the table and list (1) all of our child’s pain/symptoms, (2) what we had been through to try to fix the pain or symptoms (none of which worked for anyone), and (3) all the things in life that our kids were missing out on due to their pain/symptoms.  The primary goal of the PPRC is to get list #3 back - all the things they have missed out on in life.  Idea is that if your child is going to have a chronic illness anyway, do you want them to do it in bed/alone/isolated/depressed or do you want them out living a normal life and happy?  The amazing thing is . . . by refocusing the kids away from their pain/symptoms and focusing them on living a functional life, their symptoms and pain decrease over time and may disappear all together.  Concept here: neuroplasticity - our brains can be “re-wired” by ignoring the pain/symptom neuropathways & creating new healthy neuropathways by living a fully functioning life (despite the pain or symptoms).  This is what the kids are learning how to do here at the PPRC.  The program teaches the kids how to shift their focus away from “How I feel?” to “How well do I function?”.  Much more on this in a later blog.  

Raw temp:  -21 degrees

Wind chill:  -39 degrees