When I worked in an in-patient hospital setting on the brain injury team, I saw a lot of families struggling to make sense of the devastating thing that had happened to their loved one and, by extension, their family. I watched people move through the stages of grief and I watched people get stuck on the idea of finding a way to make this injury go away. I knew families that traveled to foreign countries for treatments that were not available in the U.S. and families who sought advice from alternative medicine advisors here in our country. There were stories of stem cell transplants and hyperbaric chambers and herbs and oils. Of course, all of these treatments and travel expenses cost large sums of money that were not covered by insurance. It was hard to watch these families act in desperation and, at times, turn against the established medical care they were receiving. It was even harder when the patients returned with little or no improvement after their treatments.
When Gray first began receiving services for autism, he was enrolled in a pre-verbal program at the Callier Center for Communication Disorders. This was a preschool-type program for very young children who had not developed language skills.The program lasted for 2 1/2 hours each morning. Many of the families traveled for up to 1 hour to get to the center, and there was an observation room above the classroom, so lots of moms would just go up there and wait/observe while their children were in therapy. Because of the age of the kids enrolled, many of them had not yet received a formal diagnosis or were going through the process and had just been diagnosed with autism or some other developmental delay. This mixture of anxiety-ridden moms with extra time on their hands was a dangerous combination. I am sure that there are women who were in that room who would tell me that it was a fabulous environment for collaboration and support, but to my eyes, it was the same as I had seen before: desperate parents being exploited by “alternative” medical professionals.
These moms would sit in the observation room with their binders of contacts and lab work and diets and supplements and compare notes. The problems I had were these:
None of the contacts were medical doctors with hospital privileges. They were doctors, but they were operating outside of the established medical environment. None of them were in network with any insurance companies. There was only one lab in the country that would process their bloodwork or urine/stool samples. They sold supplements that ran up to $1000 per month that could only be purchased in their offices. And, they did all of this under the premise that the traditional medical field could not be trusted. They claimed that there was a conspiracy among doctors and the pharmaceutical companies that kept the truth about curing autism suppressed.
I took issue with all of this. First, I do not believe that doctors are conspiring with anyone to keep autism from being cured. I have known too many doctors in my life to believe such a ridiculous claim. Doctors go into the medical field to help people. Yes, there are good doctors and bad doctors and ethical ones and unethical ones; but overall, the vast majority are just trying to help. Conversely, these alternative doctors are trying out treatments on patients that have no evidence-based research to support the things they are trying on these kids. That seemed dangerous to me. Second, I am immediately skeptical about any lab work that can only be processed by one lab in the world. Lab work should be an objective measure and any lab should be able to look at anything that is legitimately out-of-whack. Third, the expensive supplements just looked like a money-making scheme to me. Why must they only be bought from the doctor who prescribed them? If a doctor truly believed that a patient had a deficiency of some vitamin or essential nutrient, they could write it down and let the family buy it at a store that sold vitamins, right? So, I concluded, these doctors appear to be exactly what they accuse traditional doctors of: charlatans who take advantage of parents who would do anything for their disabled children.
I spent the next few years keeping my head down among other autism parents. I continued to load Gray up with therapy and I started him on medication that our neurologist prescribed. I did not put him on any special diets or give him any supplements. I took him to a regular allergist for allergy testing and management and I consulted with a licensed dietician (note the word “licensed”) to ensure that his diet had all the nutrients he needed. I did not share my opinions with the other moms unless they asked me. Much like anything else in parenting, I understand that a parent must do whatever they can to feel like they have done everything they can for their child. There is no peace until you feel like you have explored all viable options. I get that, but, in many instances, I would poll therapists in a variety of professions who worked with children like mine and they all reported few to no improvements in the kids that they saw who were participating in alternative treatments.
Then, about a year ago, I read a book that was suggested to me entitled, The Myth of Autism, by Dr. Michael Goldberg. I won’t go into all of the details, but, in a nutshell, Dr. Goldberg proposes the theory that our children are not actually suffering with classic autism, but a neuro-immune dysfunction that is caused by a viral infection. This was interesting to me. He described kids with symptoms that were similar to Gray’s: lots of allergies, digestive problems, eczema, increased susceptibility to upper respiratory infections and bizarre instances of body parts turning red (Gray’s right ear often turned red for no reason). As I looked into this doctor’s practice, I felt relieved to learn that he was in-network with several insurance companies, did not sell any supplements or prescribe any alternative treatments and he only ordered lab work from national lab companies that could be processed anywhere. That made me feel like he had a level of legitimacy. On the flip side, there are only 3 clinics in the country that practice his protocol: his office in L.A., a clinic in New York, and a doctor’s office in Corpus Christi. This part was a little strange to me, but the other factors outweighed my bewilderment and I decided to make an appointment with the office in Corpus Christi. My neurologist was extremely wary of my decision and warned that his methods had no research to back them up. I told her I understood, but I needed to pursue this avenue if only to learn more about it.
Two months later, Gray and I were on a plane for a day trip down to the Gulf Coast.
In the interest of keeping these posts a manageable length, I will continue my story in my next post.