"Your Son is NOT the A-Word"

This week, my husband and I made a three day trip to the Los Angeles-metro area to see pediatrician Dr. Michael Goldberg. As we traveled, we counted the number of doctors that have been involved in our son's care over the past 13 years. We came up with eleven.  If you include us, his parents, then the number increases to 13, as we are also doctors. The overwhelming majority of the physicians we have seen were baffled. One DAN! doctor shook his head and said, "some kids will always be special", simultaneously taking hundreds of dollars from us.  The life review over the course of this trip caused me to break down, sobbing. Who would ever think that a child would be diagnosed with anything in the 21st century and no physician would examine the symptoms and try to find a cause?  Chronic diarrhea, a full body rash, hyper-allergic immune system, a loss of a dozen words, loss of eye contact.  In the United States of America, these symptoms are overlooked daily and called autism. Our first part of the present journey was to have a NeuroSPECT scan of the brain to determine blood flow and perfusion of our son's brain tissue. The exam was performed under sedation, as it takes 43 minutes and requires the child to remain perfectly still.  The results showed decreased perfusion of both temporal lobes, particularly on the left side, the area key for speech. As Dr. Goldberg explained the scan, there is no brain damage, but the temporal lobes have been sitting, idle. They are waiting to be shifted into gear.  Why idle? Think about when you have a cold or the flu.  How does your head feel? Groggy, spacey, zoney, can't think as well as when you're healthy? Our body naturally shuts off this area of the brain when we are ill. After a few days, it gets switched back on and all is well. Unfortunately, for our child, he has had a stealth viral illness for years.  It was undiagnosed. Just a few blood tests showed an immune system chronically challenged, and the temporal lobes have been sitting idle, waiting.

The second visit was a two and a half hour session with Dr. Goldberg at his office.  He thoroughly reviewed our son's history with us and was incredulous that his first pediatrician could ignore so many symptoms. The conclusion was that our son does not, and has never had, the a-word.  Dr. Goldberg repeatedly assured us that we are not alone in this journey any longer. He wants weekly updates, monthly conversations, but most of all, he knows our child can and will get better.  It will take us some time to relax into finally having the help we need, but how refreshing!

*Note: This post was written in 2012, and while Dr. Goldberg did help us identify and treat immune system issues and several infections, my son had a deeper illness. We needed to see a Lyme-literate practitioner to get adequate and complete treatment.