What We Need

     We’ve run into some wonderful doctors in C’s life, and some truly horrible ones as well. There was only one, however, who made ME cry. It’s a bad sign if a doctor sends in someone else to take the patient history, because in C’s case, the doctor almost has to hear his medical history at the same time s/he is looking right at him. It’s so difficult to reconcile what he’s been through with what he is now that if you read it without seeing him, you expect him to be curled up in a ball in the corner unable to speak or walk. When C did not display whatever behavior this particular doctor expected him to display, she became very dismissive. Combine that with C being his charming self and asking her how much she weighed (a phase that has passed - I never quite figured out how to explain that one to strangers in the grocery store), she turned to me and said, “I see a very beautiful little boy. Why are you here?”

     This was long before we had a real diagnosis for C. People were throwing the autism word around a little bit, but no one had landed that on him yet. We still weren’t sure there wasn’t something far more serious going on, and knew there were tests still to be run. I knew she saw children whose bodies were far more afflicted than C’s, but there were very real concerns about his health: his failure to gain any weight from the time he was 18 months to the time he was 3.5; his puzzling, random, serious limping episodes that landed him in the hospital once because his doctor was so concerned and still continue to this day; and his complete inability to handle even the smallest of colds without it exploding into pneumonia or something close to it.

     Why are you here?  In that single moment, I went from being a rightfully concerned mother whose child was making the rounds of various specialists - none of whom could seem to pin down the multiple irregularities in his bloodwork into one particular medical diagnosis - to a mother who was wasting a doctor’s time. I felt like I was projecting something onto my child that simply wasn’t there. As if, because he was happy, charming and engaged with her, she summed up his diagnosis (or lack thereof) in mere seconds just by looking at him. He simply was being his usual self.

     And so began C’s run at fooling some experts - not many - but a few. I left that doctor’s office in tears that day, frustrated that he and I were not taken seriously. Since then I’ve learned to run from professionals like her, but I also chuckle at how easily they’ve been fooled by a young child.

     Nah, just something in the food and our genes, apparently. One of the first interventions recommended for children with speech delays is the gluten (wheat, oats, barley, rye) free, casein (animal milk protein) free diet (GF/CF). C has been GF/CF since he was 18 months old. But I’ve recently found out I have celiac disease myself (and have been GF for 6 weeks now!), as well as carrying both sets of genes that are the best predictors of celiac disease. Generously I passed on one set of these genes to C. 

     I am part of the camp that believes children with autism carry a set of genes that predisposes them to the disease. I believe autism is a medical disease, not an irreversible brain problem. I believe that any number of assaults on their systems can trigger the disease for these kids who seem less able to process things through their bodies. C has multiple food allergies, and his body can’t handle the complex proteins found in wheat, milk, and soy. He has some type of yet undiagnosable autoimmune disorder that affects his joints. I believe his repeated illnesses last year were due to the chemicals off-gassing out of our new carpet. We gave him the flu shot the first two years of his life because his doctor told us to - along with the two full doses of mercury that came with those shots (as well as the mercury from the flu shot I received when pregnant). He has live measles virus in his system (presumably from the MMR shot), and has extremely low clinical immunity to pneumonia. Combine all of that with his traumatic birth, and is it any wonder his system reacted the way it did?

     I do not believe C’s autism was caused by vaccines. He had autism from birth, and I think the vaccines simply served to exacerbate his condition. However, we simply must demand more research into ALL the chemicals to which we expose ourselves and our children. We stand to lose too much as a society if we don’t help these kids.