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 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:

  1. Fever over 102.8
  2. Unconscious (not POTSy passing out)
  3. Bleeding profusely
  4. Protruding bone
  5. 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.)

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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
  • never say “I can’t”

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