The Book

The Book

Not that long ago, a good friend called me after her young son had been diagnosed with autism.  She was crushed.  “What can I do?” she asked.  I stared into the phone.  Not much I thought.  “Get him in a good ABA program” was all I offered lamely.  It was all I had. 

She called me again several months later.  “Have you read the book on Autism by Kenneth Bock?” she asked.  I laughed to myself.  I was so deep under water that reading a book seemed like a luxury I would never enjoy again.  We had our plate full with Coleman’s behavior problems, OCD challenges, melt downs, and rigidity.  His issues made finding an appropriate baby sitter a challenge, and so our social life was also limited.  We also had Emma’s diabetes and corresponding doctor visits, busy academic and athletic schedules for both girls, and, with both Billy and I working full time, well, we were barely treading water.  “No, I haven’t heard about it” I replied instead.  She told me briefly about the book, and mentioned she thought it could help with her son.  “You should get the book.  It’s pretty interesting” she said. I hung up the phone and went on the computer to Amazon.  I googled  “Autism and Kenneth Bock” and sure enough the book came up.  “Healing the New Epidemic:  Autism, ADHD, Asthma and Allergies.”  I read the summary and thought about it.  I put the book in my cart and closed the computer just as Coleman began to scream because Emma had shut off the bathroom light. 

Another 6 months went by and I hadn’t bought the book.  It was still in my cart but I kept checking the “save for later” button any time I placed an order.  My friend called again and she casually asked if I had read it.  “Just ordered it!” I lied.  I hung up, went online and ordered it.   In two days the book came, and for the next week, I couldn’t put it down.  I was writing notes in the margins, placing post-its on pages, and I dog-eared so many pages that it would have been easier to dog-ear only the pages that I didn’t find important.  That book.  It single-handedly changed me.      

The book is written by Dr. Kenneth Bock, a well-known physician with more than three decades of experience treating patients via “alternative” approaches in medicine.  His expertise surrounds complex, multi-symptom disorders, including Autism.  His approach to autism begins with a belief that autism is a disorder caused by a combination of lowered immune response, external toxins, and problems caused by certain foods.  The treatment protocol commonly includes nutritional supplements, special diets, testing for hidden food allergies, treatment of intestinal bacteria and detoxification of heavy metals.  Sounds wacky, right?  That’s what I thought too. 

Wacky, but fascinating.  He tells story after story of his patients, explaining in detail his thoughts about their symptoms and his multifaceted approach to treatment.  It’s clear that the treatment process is not easy.  He talks a lot about being like an investigator, testing and examining blood results, testing and treating, and repeating it all again, trying to fix one by one each piece of the complex puzzle.  Later, I heard a talk given by another biomed doctor.  He used this analogy:  think of your body like a high tech manufacturing line.  If even one small part breaks, then the machine isn’t going to work.  Figuring out exactly what isn’t working right and how to fix it takes time.  And trying solutions takes time, because the same solutions don’t work on all kids.  But, the important point is that some solutions do work.  And work quite well, it turns out. This approach to treating autism, when combined with behavioral and educational interventions, has actually ‘recovered’ hundreds or thousands of kids from Autism.  In a great many others, it has led to significant improvements.  

I found it particularly noteworthy that Coleman shared a similar history and experienced many of the same symptoms as the kids included in Bock’s book:

·         GI Issues -Coleman has a very long unexplained history of GI issues, including reflux, alternating constipation and diarrhea.  He was tested for Hirschsprungs Disease at about 6 months of age due to his inability to have bowel movements.  He was hospitalized for a week when he was about a year old due to a 7 day fever and enlarged intestine, the cause of which was never determined.  And due to nausea related to the chemo during the Leukemia, he stopped eating entirely and had a feeding tube placed.  G I issues?  Yeah, we got that. 

·         Gluten/Casein intolerance – the theory is essentially that children with autism cannot completely digest some proteins (specifically those in gluten and casein) resulting in undigested proteins, known as peptides, that pass through the intestinal membrane and enter the CNS.  These peptides have an effect like opiates (morphine) in the brain and nervous system, causing disruption to normal neuroregulatory processes.  Long term exposure can have damaging effects on the developing brain.   I didn’t know if Coleman had this issue, but I knew one thing:  Coleman ate a lot of gluten.   

·         History of high antibiotic use - The possible link between antibiotic use on children with low immunity and autism is something I’ve now read about over and over.  Some – not all - kids with low immunity have a difficult time shedding the toxicity and metal from medicines.  Coleman certainly had more than his share of antibiotics.  He faced many bouts of illness, both test-confirmed (bronchitis, strep) and non-test confirmed (asthmatic episodes, aforementioned GI issues), and was treated every time with antibiotics.  And then there was the oh, lets round it out to three years, of Chemo and steroids.  He has even had lifetime doses of some medications.   He can never, ever have some of the medications he had during those three years again in his life because, before he was three years old, he had already had the lifetime allowable dose.  Seriously.  And clearly, since the entire chemo process is to kill of the cancer cells, which at the same time kills off healthy cells, yeah, you could say he received those drugs during a low immune time in his life.  And this is not to mention all the radiation.  To his head.    I was starting to now wonder what effect all of this had on Coleman and if any of it contributed to his autism.

·         Yeast Overgrowth:  I wasn’t sure if Coleman had this, but I was willing to wager a substantial amount of money that he did.  Yeast is present in all of us, and is considered commensal (neither beneficial nor harmful).   But overgrowth of these organisms can have many detrimental effects, including asthma, allergies, eczema, complications in the GI tract, and broad immune suppressive effects.  There have been cases when clearing yeast overgrowth alone is game-changer in terms of progress for kids on the Spectrum.  The first case involved a young girl with autism.  Her parents took her to the doctor for a white film they could see on her tongue.  It was thrush and the doctor ordered Nystatin.  As expected, the girl’s thrush cleared but remarkably so did her autism.  Word among the biomed community spread quickly and soon many biomed doctors began to add this to their regimen – test for yeast, and if higher than normal, treat it.  Coleman had countless cases of Thrush during his chemo days, and still we get the ‘white tongue’ from time to time.  He also has a substantial amount of eczema on his body and arms.  And we fought cradle cap on his head until he was five or six years old.  All signs of too much yeast. 

·         Sudden onset OCD:  Yup again on this one.  Summer of 2012.  It was really when Coleman changed from his easy going, happy little guy to suddenly needing to touch every corner, walk a certain way, go through a certain ritual, repeat exactly what was going to happen in the next hour (again and again) and it was the first time he really hit anyone.  It started suddenly and at first, we thought it was another quirky way of his.  But it very quickly escalated.  His need to touch, move, stand, and repeat things became intense, and the inability to do so set off tantrums and meltdowns, the likes of which we hadn’t seen previously.  It was also the start of problems at school.  Upon his return that September, he began to aggress against teachers and aides when he couldn’t fill his OCD needs (i.e. No you can’t touch every plug outlet as you walk down the hallway).  When the school first told me about his aggression, I honestly did not believe them.  He doesn’t act like that, I thought.  That is not him.  But it had become him.  Seemingly overnight.

There were so many parts of the book that I identified with, I couldn’t possibly list them all here.  I kept stopping and saying to Billy “You have to read this.  You will not believe how much these kids are like Coleman.”  I couldn’t stop thinking about the book after I had finished it.  Could this possibly be true?  The man was a well-respected doctor.  But still.  It really had me thinking.  What if?  I went online and found hundreds and hundreds of stories of people that followed the biomed approach whose children had ‘recovered’.  For many more, they reported major improvements.  And for a great many, they were still hard at work trying.  It didn’t take long to decide.  Within a week of finishing the book,  I made the call to Bock’s New York office.  I took the first available appointment, 4 months later.  And then I waited and prayed.