The EpiPen Bin,
Vaccines and Autism – Have I Lost My Mind?
My 3 year old, my youngest, appeared suddenly at my side, surprising me. I had just left him in front of the TV in the other room with a homemade watermelon, mango smoothie and permission to watch some Sponge Bob. “My throat is funny” he croaked and then he started gagging, vomiting and turning blue. Somehow I recognized that my previously allergy-free child was having an anaphylactic reaction. As I frantically dialed 911, I sent his 13 year old sister upstairs to get an EpiPen. All the EpiPens in the house were adult size and I worried about dosage, but what choice did I have – he had now collapsed and was gasping for breath. My brilliant daughter returned in seconds, with both an Epi-pen and a bottle of liquid Benadryl. I opened the bottle and just poured it into his mouth and held my breath. Miraculously, the effect was almost immediate – his breathing began to improve and by the time the EMTs arrived he was breathing without struggling and his blood oxygen levels were back to normal.
We headed off to the pedestrian’s office immediately for a check up and had an EpiPen Jr. by the end of the day. Add another “issue” to the list of illnesses and disabilities affecting my children I thought. As with all the other “issues” they battled – ADHD, auditory processing disorder, sensory integration disorder, auditory defensiveness, learning issues to name just a few - I chalked it up to genetics – somehow my husband + me = trouble. Many years ago, in the 1960’s, when my sister was diagnosed around age 3 with a myriad of food and environmental allergies it was a rare and unusual diagnosis. We were forever explaining to friends, family and schools that there were many things she couldn’t eat or be around. Many were dubious – they had never heard of anyone allergic to FOOD. Later on my mother developed many severe food allergies which made it nearly impossible to eat out and required constant dosing of allergy medicines, rounds of huge hives, headaches, stomach aches and vomiting. Even eating at a friend’s house was fraught with worry since few people believed or understood the reality and severity of her reactions.
Thus, when my youngest began Montessori pre-school later that year at the small program in the Methodist Church basement a few blocks from our house, I came bearing his EpiPen Jr, liquid Benadryl and an expectation that I would be spending some time explaining his issues. Our daughter and youngest son are 10 years apart in age. I had been vaguely aware of the increased acknowledgement of food allergies since my last stint in pre-school, but as with my kids’ other issues I assumed this was simply the wonderfulness of more Awareness! More Acceptance! It had not occurred to me what it really represented –More.Severe.Food.Allergies! As I walked up to the front desk, the Director looked up. “Oh, hello. Welcome to School. The EpiPen bin is right over there.” WTHeck?!?! My mouth dropped open – an EpiPen BIN. In a school this small?? No explanations needed?!?!? I called my husband on the way home – what in the world was going on??
Where were all these cases of severe food allergy coming from? How, in the 40 years since my sister’s diagnosis had things gotten dramatically worse, not better? When our pediatrician packed us off to see an Allergist I expected to find some advances in the science – if the problem was getting worse, researchers must have made some progress, right? I knew no one had found a cure for allergies, but there should be better treatment, better understanding of why this was happening – right? I was, however, sadly mistaken. My Inner Angry Wonk was appalled - I began reading everything I could about the growing epidemic of allergies.
Were you surprised to see vaccines linked to “the A word” in my returning blog post? Well – you and me both! As I explained then, when I stopped writing 4 years ago, it wasn’t because my Inner Wonk was any less angry. In the meantime, I was still shocked and dismayed by the amount of medical harm that had impacted my family and so many people I knew. As a policy analyst I struggled to understand how medicine in the U.S. could have moved so far away from evidenced based practices, become obsessed with searching for “cures”* and seemed completely disinterested in causation and prevention (or maybe it always has been that way and I just started noticing?) And despite all the money the U.S. spends on health care and health care research, everywhere I looked I saw new and growing chronic illness, life-threatening diseases, allergies and “issues”. I was (and am) determined to understand this better.
My personal research took on more urgency over the last few years as several diseases and missed diagnoses impacted my life deeply. First, my daughter was finally - after years of needless medical interventions and ridiculous diagnoses - successfully treated for Chronic Lyme disease and finally found healing for her life-long gut issues (variously diagnosed over the years as Irritable Bowel Syndrome, Crohn's Disease, and Ulcerative Colitis). Win to integrated medicine!
Next, I helplessly watched for years as my cousin and his wife fought to keep their son alive as he vomited (and diarrheaed) his way thru infanthood and toddlerhood. Eventually, he was diagnosed with both life-threatening food allergies and eosinophilic esophagitis - a severe autoimmune disease where eosinophils, white blood cells which normally protect the esophagus from germs and parasites, instead, in the presence of various foods and allergens attack the esophagus itself and cause chronic, debilitating inflammation. This means it is nearly impossible for their child to eat - essentially he's allergic to food – pretty much ALL food. He is now 8 and except for a few allowable treats gets all his nutrition via feeding tube. Just being in a room where eggs are being cooked can make him very sick. He can't sit down at big family gatherings and enjoy the food and fellowship that comes from cooking and eating together. School parties, field trips and Cub Scout projects involving food are off limits for him. It's something he and his family have to think about almost every minute of every day.
The last story is the saddest. My dear friend, a gifted medical doctor herself, developed seizures and then a severe autoimmune disease. My frantic research into the immune system and auto immune disease was too late to be of help to her. She died in December of 2014 at just 45 years old.
To be clear. Up until as recently as 2013, I was adamantly “pro-vaccine”. My kids are pretty much VaxXed up. Even as my research into the immune system, our microbiome, obesity and chronic disease, etc. kept pointing me toward the fact that any understanding of the science suggests that vaccines can never be either entirely safe or even reliably effective – I was incredibly reluctant to believe so, but the more I learned the less I could ignore...
*(Don’t get me wrong – cures are critically important for those of us currently suffering from disease, myself included and especially in the case of my cousin’s child. However, I cannot understand how we can find “cures” if we aren’t interested in understanding the causes of the disease – and preventing it. How can you fix something if you do not understand the mechanisms of how it came to be? And if our current model of medical care really cared about care, wouldn’t we all want fewer diagnoses in addition to early detection? Fewer rounds of chemo? Fewer cases of chronic pain? Less auto-immune disease? But then what would we do without all those wall-to-wall Pharma ads that now sponsor and pay for our sports, entertainment and, of course, our nightly news…..)