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…..)
Amazing what you find when you actually take the time to do the research. Be informed before you give consent for any and all medical interventions. They bank on the fact that you will NOT do the research and they have equated your saying yes with informed consent.
ReplyDeleteSpot on! Last paragraph says it all.
ReplyDelete