Illusions, Delusions and Wishful Thinking...THE Cure Is In Sight

     After twelve years of searching for answers to what actually works with our son's contracted, disabled body, I believe that I have developed a repertoire of knowledge exceeding most people in the medical profession and allied therapies.  If it exists, we have tried it; if it didn't work, we gave it up and kept on looking.
      Some  therapists and doctors communicated clearly that they believed that their intervention would make a difference in our son's life but they truly were "in over their heads", not understanding what impact they could actually have on our son.  Understanding brain injury is not a priority for most professionals because they believe, mistakenly, that healing plateaus after six months or a year. Still, in their arrogance they would say, "I can help your son." and we would believe them, investing time, energy and money.  We heard it too many times over the twelve year span.  A few professed to "know" what Adam wanted and this always hooked us.  In my life, I have only met a few authentic clairvoyants who can tune into the deepest reaches of the inner Adam or the inner Phil.   He, like his dad, doesn't like to reveal much of his feeling world to others...it's a man thing.
        This blog entry confronts  those who sell hope when they are really selling themselves; who make promises based upon a myopic view of their own realities.  Adam is severely brain injured, non-verbal, spastic and needs every aspect of his life attended to. We lovingly take care of him every waking hour.  He is also simply beautiful and lovable and only occasionally a pain in the ass when he spits his carefully prepared and pureed food at me.  So what works and what is simply bogus or placebo?  Glad you asked....

• Botox (to reduce spasticity):  Poison is poison; some recent studies show that botox affects more muscles than targeted.  Effects are minimal, treatment is painful, many injections to deaden targeted muscles; short duration and you need to keep poisoning your child.  Doctors say the poison is minimal, ok......if you say so.
• Serial Casting (to stretch spastic and contracted muscles):  Pump botox into a muscle, stretch the arm and cast in plaster.  Repeat the process.  Son howls in pain so I use wire cutters and remove the cast...really, makes the contraction worse.
• Traditional Physical and Occupational Therapy (Also AFO's and DAFO's):  Here is a science that hasn't updated itself in 50 years.  Pull and tug repeatedly on a contracted limb and it will stretch the muscle.  Nice theory, but no science behind it.  Makes the contractures worse.  Even well intended people who cannot see beyond their allopathic training can actually do harm despite their motto of "First, do no harm."  Trite sayings "piss" me off.
• Craniosacral Therapy:   Adam received this form of therapy for many years - fitting our need to find gentle and non-invasive ways to help him.  Therapists tune into what they call the craniosacral rhythm.  The practitioner claims to gently work with the spine and the skull.  Restrictions of nerve passages are said to be eased, movement of fluid through the spine is said to be optimized and misaligned bones restored to their proper position.  Very little scientific support for this and the training seems minimal. Don't believe it hurt Adam but not sure it helped. Finding an effective and well-trained therapist is essential.  
• Standers and Gait Trainers:  Well, these might be useful for mild disabilities.  There is no theory about why you put a person in a stander other that a normalization process (it makes the parent feel good).  So take a weakened body, with unstable joint capsules and unstable myofacial structure, strap them into an upright prone and supine position and guess what happens?  Well, gravity (remember Newton getting bopped with the apple) pulls down on the visceral body core and the spine is pulled left or right depending on which side is weakest and you get massive scoliosis and deteriorated joint capsules.  So my son feels normal in a stander they say, but what price does his body pay. PT's will tell you that gravity's pull reduces tone....yeah, right.
• Speech Therapists:  Well, they are good for oral motor stimulation when your child is ready to transition from a tube feed to  mouth.  They can also arrange for a modified barium swallow test to insure kids don't aspirate. They also try facilitated communication (hocus-pocus projection of the facilitator); eye gaze; buttons, switches, etc.  They all are outrageously priced and when the result rate is 50% correct, the Speech Therapists announce success.  That's the same rate of success as a random coin toss.
• Intrathecal baclofen pumps:  A hockey puck with baclofen implanted near the abdomen and shooting drugs into the spine.   Makes life easier for the caretaker, but what about the child.  Infections, wrong dosages, poor circuitry, infections, dislodged catheters, infections.  "I know this will help your child."
• Surgery:  Always a bad option unless the child is screaming in pain around the clock.  Cutting tendons, spinal fusions, steel rods to cure scoliosis, hip subluxation operations, removal of salivary glands because drooling is unappealing, etc.  Most surgery is either cosmetic (so the child looks normal) or to make care-giving easier.  With scaring, infection, hospital borne illness, continuing body changes because of a lack of address to the myofascial collapse caused by brain injury, surgery leads to repeated surgery and not for the increased function or mobility of the child.  The more invasive the procedure, the more likely it won't work.  One of our biggest mistakes, early on:  a tendonectomy (still whip myself for allowing this intervention).
• G-Tubes, Fundos and nissens, etc.  Valuable  in life and death situations. Try by whatever means to facilitate oral motor development and proper swallowing (one approach is deep pharyngeal neuromotor stimulation). The natural path of food is mouth, esophagus, stomach.  To bypass these organs will lead to an lack of exercise of these portions of the digestive tract.  A lack of exercise leads to weakness and atrophy.  Any guess why so many people with g or j tubes have serious reflux, vomiting and all sorts of gastric issues?
• HBOT:  Actually not on my "shit list".  Effects are there but somewhat exaggerated.  150 dives helped Adam's peripheral vision, cognition and general health.  Spasticity was reduced but regressed when treatments stopped.  I speak of this therapy as a plus.
• Homeopathy:  I have some good things to say.  Some report that these modalities are primarily successful because people believe that they will be.   The placebo effect is actually very good, it produces positive change without invasive techniques.  I like that!  We did have some dramatic responses from Adam after a few homeopathic remedies, convincing us that it was probably more than placebo,  allowing us to believe in the actual energetic effects on body systems.     
• Prayer, Institutional Church Services Interventions:.  As a non-believer I couldn't recognize any effect if it hit  me over the head.  In my wildest imagination and I have a wild one, I could never understand a personal, all-knowing, all-loving, all-powerful god allowing this to happen to my son.  Someone says that god never gives you more than you can handle.  If I were a weak man, would god have given me a normal son?   I am more of an advocate of "shit happens" to people you adore and love and that you embrace that "shit" with love (literally and figuratively).
• Energy Medicine: (ie. Johrei, acupuncture, shiatsu, reiki, etc.) There are many practitioners of various forms of energy - based medicine.  A few can actually direct this energy for healing.  Many claim, few can do (there are healers and self-professed healers).  My deep belief in energy medicine flows from Einstein's theorem that e=mc(squared).  Energy and mass are interchangeable and the sum total of energy and mass in the universe is a constant for all time.  This explains soul and immortality.  Mass converts to energy to mass to energy in a never ending cycle.  A few gifted practitioners can direct this energy to heal since quantum physics posits the singular unity of all energy.  Energy and mass are identical, just differing vibrational states.  A weekend workshop does not a healer make.
• ABR (Advanced Biomechanical Rehabilitation): Eureka!!!   A scientifically based approach to normalizing body structure distorted by a brain insult.  Takes many years, takes lots of money, takes a lot of learning and practice...it works and I see change as Adam's body normalizes and hopefully will lead to mobility and function.  No promises, no rhetoric, lots of commitment...after seven years I am energized and see the fruits of those years...a happy, healthy kid.
• Good stuff:  Cell Salts (Alex Sutton); Quantum Reflex Integration (just getting into this concept with a cold laser, but I am seeing good things), supplements, especially magnesium (helps tone and bowels).
• Stem Cell (lots of hype and fraud). Absolutely bogus (at the present state of research on humans). People who I have seen who have had their kids treated have shown slight cognitive gains (about $30,000).  It's available in a country like China where baby formula, pet food and toothpaste manufacturing have killed people. I won't even mention Chinese manufactured drywall emitting lethal gases.  I am skeptical.  Even worse are Mexico's and the Dominican Republic's stem cell factories.
• The "Ashley Treatment" or growth attenuation therapy. Criminal!!!  I can't even write about this de-humanizing procedure.  I find it on the same level as calling our kids "pillow angels".  They are human beings, albeit a bit different, but should not be deified for reasons I chose to avoid to express.

My opinions only, there is nothing medical in my background.  This is not advice to anyone, just a reflection on 12 years of searching and learning.  Your experience may be different, your belief systems may be different...it's all ok.