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.
