By Dan E. Burns, Ph.D.
Soon after Ben was diagnosed in 1990, I began keeping a diary. By 1995 I had accumulated more than 500 pages of observations, fears, and hopes, all shaped by the vision that someday he would emerge from autism and re-enter the world practically indistinguishable from someone who had never been afflicted. But by 2008, when Ben turned 21, “someday” had crossed the river to a more perfect time and place where every tear will be wiped away. Until then I have an imperfect story of an ongoing struggle, one that has left me with much still to grieve, but also much to celebrate.
When I sat down in December of 2007 and wrote the first sentence of Saving Ben I could not have said how the book would end, or even why I was writing it. I only knew that the time had come. I dreaded writing the scenes that exposed aspects of myself I would have preferred to keep hidden, but it became clear to me as I relived those times that Ben’s story was inseparable from his mother’s story and from my own. Autistic children discover the fault lines in a marriage, and their fates hinge on challenges to the family, how we rise or fall: how we resolve our guilt, our anger, our shame; how we reach out to a future that seems at times dark as the Styx. Perhaps I could help other parents struggling with autism and with the medical system, the school system, their marriages, and themselves. I had only to tell the truth.
In 2005, Sue and I bought the videodiscs for the most recent DAN! Conference presentations – about 20 hours worth of medical information – and took turns watching them, comparing notes and ideas.
“Did you see the Martha Herbert video about brain inflammation?” asked Sue.
“Yes. Maybe that’s why Ben has a big head,” I replied. “Did you see Jon Pangborn talking about methylation?”
Sue’s excitement rekindled my own. I ordered Pangborn and Baker’s Autism: Effective Biomedical Treatments and began searching for a DAN! doctor who could guide us through the complicated protocols.
I typed Dr. Kotsanis’ name into Google. Up popped his current address and telephone number. Yes, Kotsanis remembered Ben well, and would be happy to see him again.
We arrived for our appointment on September 18, 2006. Following Dr. K’s advice, Sue and I tightened Ben’s gluten-free diet and reduced his casein intake. Dr. Kotsanis also prescribed glutathione and methyl-B12 shots. After Ben’s metabolism regained its balance and his gut began to heal, Kotsanis pronounced him ready for the next crucial step. We began Ben’s chelation, his detoxification, in December, 2006: DSMA three days on and four days off. Every three months, we measured Ben’s progress with a challenge test, the Toxic Element Profile, “So we’ll know,” Dr. Kotsanis explained, “when to stop.” The challenge test didn’t show how much mercury and other heavy, toxic metals were left in Ben’s body – there is no test for that – it showed how much was coming out.
For the first three months, lead came pouring out. “I was tearing down a lead-painted barn when I was pregnant,” said Sue. “I’d forgotten about that.”
Six months into the protocol, Ben began excreting significant quantities of mercury. “We’ve got the culprit,” said Kotsanis. “We’re shaking it loose.” Ben took five-week series of 40 high-pressure hyperbaric oxygen treatments, supporting his detoxification, and we bought a home low-pressure hyperbaric chamber for home use. Finally, on my birthday, December 7, 2007, one year after we had begun, Dr. K. recommended that we cease chelation and move on to the next protocol.
More tests had revealed another problem, Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcus (PANDAS), a disease that attacks the basil ganglia, the communication channel between the lower and higher brain. “That could be why he’s not talking,” said Kotsanis. “It may also be driving his hyperacusis.” He put Ben on a protocol of antibiotics, antivirals, and antifungals, plus probiotics to replace the good gut flora. Ben’s symptoms improved. A follow-up PANDAS test showed seven out of twelve panels trending down. Kotsanis prescribed a mineral solution, chlorine dioxide. “It kills everything but the patient,” he joked. But would it cure Ben’s hyperacusis?
By July 4, 2008, Ben’s hyperacusis had vanished. He has not fully recovered by any means. But Sue and I had had found that we were living a recovery story after all. What is recovered is family. Like the characters in The Wizard of Oz, we have made a journey through a perilous land, and we have discovered in ourselves the gifts that prepare us to seek a future beyond the fear, the darkness. After the earthquake, wind, and fire, a still, small voice of peace.
The journey of course is not mine alone. It is the journey of every brave, broken-hearted father and mother; of every teacher, doctor, preacher, caregiver, administrator, scientist, politician, who sees in the tragedy and triumph of a child a challenge and a hope. At the end of the road is not a gleaming emerald city, but a promise. We do not know why some children recover and others do not. We have much more to learn about autism etiologies and treatment. But we will tell our stories, and we will continue the journey. Together, we will overcome.
Dan E. Burns, Ph.D., graduated from Oklahoma State University in 1979. In 1990 his third child, Benjamin, was diagnosed with autism. Dan and his wife, Susan, explored early biomedical and behavioral treatments. In 1992 the couple divorced and Dan became the primary advocate for his severely autistic, profoundly retarded son. In 2006, Dan and his former wife joined forces to implement the new biomedical protocols coming out of the Defeat Autism Now! conferences, including diet, antifungals, antivirals, anti-inflammatories, nutritional support, and detoxification. Dan, Susan, and Ben live in Dallas Texas. Saving Ben is to be published by University of North Texas Press in the fall of 2009.