Overview

Watch the below video for a brief overview of where this all began.  Then follow the links at the left for a chronological telling of a story that continues to evolve.

Nobody needs to seek alternative treatments for a special needs child to understand how frustrating insurance companies can be.

I launched this site to chronicle our own unique battle as a form of personal catharsis, but also to inspire others to seek alternative treatments to difficult medical problems and, if they work, pressure insurance companies to wake up and smell the invoice.

Miranda was born on January 26, 2007 following a complicated pregnancy and induced labor (she had stopped growing in the womb, among other complications).  After birth, it wasn't long before we discovered she wasn't developing like a typical baby.

Preliminary diagnoses ranged from Cerebral Palsy to Mental Retardation to Mitochondrial Disorder or some combination.  Adding to the mystery was syndactyly (two fingers on her right hand never separated in the womb) which she had surgery to correct when she was 11 months old.

Miranda also had elevated levels of Creatine Kinase in her blood, indicative of a mitochondrial or muscle disorder (take note of that as you follow the story).  Her original diagnosis was mental retardation due to static encephalopathy (permanent or unchanging brain damage, presumably early in the pregnancy).  An MRI of her brain was clear.

None of the symptoms added up to any one diagnosis and doctors were the first to acknowledge the mystery.

What We Did

We dragged the poor kid from specialist to specialist, test to test.  She received physical therapy, occupational therapy, play therapy, aqua therapy and some less conventional therapies such as cranial sacral and Feldenkrais.  Aetna covered a majority of these efforts (easily thousands of dollars in payouts, minus the typical deductions), despite the fact that Miranda's progress was minimal.

Enter HBOT

By the time she was well over a year old, Miranda could not crawl or even support weight on her legs.  She yelled (that piercing squeal only baby lungs can generate) most of the day.  Accolades like, "Oh, what a cute baby!" were few and far between.

We had heard anecdotal evidence about Hyperbaric Oxygen Treatment (or HBOT, which is exposure to 100% oxygen under higher than atmospheric pressure) having a positive effect on children with autism, cerebral palsy and other neurological disorders.  We even met face-to-face with a pediatrician who actively advocated for it, and heard first-hand stories of parents who saw miraculous results for their disabled children when nothing else worked.

My wife did extensive and methodical research on the subject.  She even located a study where it lowered CK levels in mice.

But insurance wouldn't cover it because it's still considered an off-label use for HBOT and experimental in the United States.

Because the world was not flat before United States insurance companies determined it was round, we decided to go for it.  The evidence was too compelling to ignore.

We researched several HBOT facilities across the country.  There are different styles of chambers and we needed an affordable facility that offered a chamber large enough to accommodate an adult and a baby simultaneously.

We settled on Charlotte Metro Hyperbarics, approximately 1,500 miles from where we live.  It was a wise decision.  Charlotte Metro Hyperbarics is a wonderful facility run by some of the most professional and caring individuals we've had the privilege to meet.  I would also like to plug their very worthy charity, Gracie's Hope, named after their gorgeous daughter, Gracie.

We knew we were paying out-of-pocket and had settled on that.  But when we saw the undeniable results, we began to wonder why our insurance wasn't covering this.