Preamble

What would you do if your boyfriend told you he thought vaccines caused autism? Probably the same thing you’d do if he told you the Holocaust never happened or that unicorns exist or that child pornography isn’t illegal if it’s a cartoon drawing – call him an antisemitic petulant pedophile with a predilection for misinformed Playboy bunnies and dump the ignoramus for believing these mendacious factoids. Now, what if that same hypothetical boy was actually a doctor with over 30 years experience specializing in autism? Game changer? Or time for a new referral?

She blinded me with science

I like science. I believe in science. I trust in science. I have a degree in science. My analytical, logical, Darwin-worshipping mind understands science. It does not understand blind faith, religious dogma or the fact that Jon Hamm has never won an Emmy for his riveting portrayal of anti-hero Don Draper. Science is my religion. That’s why I have a hard time comprehending the rationale for willingly choosing not to vaccinate your children. It saddens me and maddens me that previously eradicated illnesses are now re-emerging because of the recent popularity of the anti-vaccine movement which is grounded entirely in non-science (thank you Dr. Wakefield and Ms. McCarthy for helping make the world dumber and sicker). I have always been a staunch supporter of vaccines. Both of my children and even my pupaloo receive all of their routine vaccinations at the recommended ages as well as all of the optional ones for safe measure, including the flu shot.  Like many other impassioned pro-vacciners, I peppered my Facebook with articles and videos in support of vaccines. I found comedians often offered the most poignant and impelling arguments – below are two of my favourites.

Jimmy Kimmel (a fellow narc)

Penn & Teller

Please understand, I am not writing this with the intention of inciting a vaccination argy-bargy. This isn’t Pink & Blue. I am simply sharing with you my strongly held views so you can appreciate the gravitas of my shock when I was told the flu vaccine may have caused Dylan’s narcolepsy.

Say what now?

Our first appointment with a sleep doctor was in September 2014. He was a lovely South African gentleman with a dry sense of humour and a quick-wit who I immediately took a liking to because of his perspicacity. He was one of the few doctors I encountered throughout Dylan’s journey who was familiar with every single piece of research I put in front of him and in fact, was often able to give me even more insight than what was detailed in the report. He was clearly knowledgeable, very well spoken and explained things in meticulous detail.  Although I had waited over an hour in a lifeless waiting room with my endlessly patient and always impeccably behaved three year old whilst silently praying to a god I don’t believe in that the 10% battery life left on my degenerate iPhone wouldn’t crap out, my indignation instantly dissipated upon learning his tardiness was due to his thoroughness. Despite running terribly behind schedule, he had all the time in the world for me. He was happy to answer all 5,638 of my pre-written questions, read all 11 scientific papers I had brought with me and somehow even manage to calm my cranky D. The man is a saint who genuinely cares for his patients. It was patently obvious he was passionate about his specialty. All this to say, I really liked the guy. But just as I was about to feel hopeful for the first time in months, he asked me the following question “has Dylan recently been vaccinated?”

RED FLAG! RED FLAG! RED FLAG!

Quickly check the degrees on the wall to make sure they’re not from Mexico.

Survey the room for possible hidden Punk’d cameras.

Check my iPhone to confirm today was the appointment with Dr. Shapiro and not Dr. Spaceman (but of course my battery had died by then, offering no support on this front).

Scan his desk for granola.

Sitting in silence while I mentally investigated his question soon became awkward and it was time for me to speak. My first instinct was to ask him if he was joking and my second instinct followed through with my first. Apparently, he was not. He went on to explain that in recent years there has been a sharp increase in the number of children diagnosed with narcolepsy and current research was focused on studying a possible link between the flu vaccine, in particular H1N1, and childhood narcolepsy. My scientific mind exploded. I was dumbfounded. Was this karma for all the anti-vacciners I previously mocked?

Let’s set the flux capacitor to October 2013

As it happened, in the fall of 2013, just a few months before Dylan started displaying symptoms of what we later realized was narcolepsy, I had taken him to get his very first flu shot. That moment now plays and re-plays in my head on repeat haunting me like an irritating Celine Dion ear-worm. Rylie had just finished a karate class and the three of us were walking to the car. As twisted fate would have it, my car was parked in front of a walk-in clinic and for some stupid, unknown, poorly thought out, spur of the moment reason I dragged Rylie and Dylan into the clinic to get their flu shots. I ignored their protestations, confident I was doing the right thing. Rylie went first with the intention of being brave and showing Dylan there’s nothing to be afraid of.  It was painfully clear this rent-a-doctor had zero experience giving children needles. As all kids do, Rylie’s instinctive reaction was to jerk her arm away. Instead of knowing to hold it firmly in place, the syringe ended up skimming her arm and causing more pain than the shot itself. We had to try again, this time explaining to Rylie to keep her arm still. The shot went messily in, she cried her the-world-is coming-to-an-end cry and Dylan was now understandably scared. Why did I let Dylan go next? Why? You would have thought that after seeing how poorly equipped this doctor was at handling my five year old, I wouldn’t let him go near my two year old, but sadly, I did and if I’m honest, without much thought. It was déjà vu all over again. Dylan squirmed, the doctor missed and it hurt twice as much as it should have. When we left, both my kids were in tears but I was proud of myself for getting it over and done with so efficiently, avoiding the need for a future trip to a clinic. Fuck efficiency. Laziness and procrastination have always served me best.

Time for research

After the appointment with the sleep shaman, I spoke with several real doctor friends of mine to get their views on the flu vaccine, still under the assumption that I had gotten mixed-up with some new-age hippie dippie doctor. To my amazement, all of my doctor friends passed on the flu shot for their families. There seemed to be a general consensus amongst my doctor friends that vaccines for all other illness such as measles, mumps, rubella, etc. were both safe and essential but the flu vaccine was questionable. They seemed to suggest that the potential risks of the shot out-weighed the risk of getting the flu in individuals who were not at risk for serious complications, such as the elderly or those with compromised immune systems. I had always believed the flu shot to be entirely safe save for the potential of having some flu-like symptoms for a day or two. But wait, why was I only doing this research now and not before my kids had their flu shot?!? Perhaps I had become complacent, maybe I was indolent, maybe I was naive. Maybe even if I knew there were some risks involved I still would have insisted on the flu shot. After all the health news report from CTV in 2013 stated that young children are particularly susceptible to complications from H1N1 and the best way to prevent it was to get the flu shot. Even the provincial and federal governments encouraged people to get flu shots. Maybe though, just maybe, I would have stumbled upon this CTV news article or this Bloomberg report with the title “FINNISH GOVERNMENT TO COMPENSATE PANDEMRIX NARCOLEPSY VICTIMS” in big bold black letters that surely would have set off my momdar. What overwhelms me with guilt on a daily basis, is not that I took Dylan to get his flu shot but that I did it on a whim with such haste. That was my failure as a parent. If I had done my research and still decided to go through with the shot, I would have felt much better about my decision today.

A quick Google search confirmed that neither my doctor friends nor Dylan’s sleep doctor were crazy. Indeed, a link between the H1N1 flu shot and childhood narcolepsy has been discovered with more and more recent research suggesting the same [1]. The Canadian Medical Association Journal reported in July of this year that a link between the H1N1 vaccine and narcolepsy had been discovered [3] and reference a study published in Science Translation Medicine [4] that shows that a protein found in both H1N1 influenza and some vaccines block a receptor for hypocretin – the same neuropeptide that is responsible for narcolepsy and cataplexy. The article went on to say that it only affects people with a specific genetic make-up and that it is very rare in Canada. If you read my last blog post you’ll know that we have had Dylan tested for the “narcolepsy gene” and that I myself have narcolepsy. A very, very small percentage of Canadians carry the “narcolepsy gene” but it is much more common in Europe. Mr. Bear and I are first generation Canadians. Both sides of our family immigrated to Canada from Europe shortly before we were born, so Dylan’s blood is likely rich with European flavour (that might explain his forward fashion sense and impressive mustache).

If you look closely, you can see his mustache.
If you look closely, you can see his mustache.

 I think it’s important to note that the evidence suggests both the vaccine and the H1N1 flu itself can trigger the same autoimmune reaction that appears to cause narcolepsy. In Dylan’s case, he never had the flu so it seems his was a combination of really good genetics, a well-planned out adventure in poorly administered flu shots and sheer luck (not only is narcolepsy rare in Canada, it’s also incredibly rare among Jews and children).

In the UK, a court recently ruled that a family was entitled to £120,000 after their son developed narcolepsy as a result of the H1N1 vaccine [5] and hundreds of other claims are expected to follow. The Finnish government is also compensating those who developed narcolepsy as a result of the flu vaccine. But Canada, with the exception of Quebec, has adopted a no-fault compensation plan for people that have been severely harmed by vaccines, once again rendering my law degree useless.

To vaccinate or not to vaccinate? That is the question.

I don’t know.

What once was a clear cut decision for me, is no longer so black and white. On the one hand, I cannot escape my Einstein-like mind but on the other hand, I have experienced the devastating effects of narcolepsy first hand and second hand (I just used the word “hand”
in a sentence four times, not once in reference to an anatomical body part – someone call Guinness). I’ve given this a lot of consideration, done a ton of research and spoken with a lot of doctors. I have decided that my kids will be vaccinated for everything except influenza. Having said that, I would never advocate against getting the flu shot but I am also no longer advocating for it. According to the government of Ontario’s flu facts website, the flu affects 10% to 20% of the population and is linked to 200,000 doctor’s visits, 1,000 hospital visits and up to 300 deaths. The chance of developing narcolepsy from the flu shot in Canada is just 1 in 1,000,000 vaccines. Despite the odds, I would still rather catch the flu every single year, even if it involved hospital visits, than risk, however minutely, developing narcolepsy. For Dylan, the risk of developing narcolepsy was infinitesimal and unimaginable but now it is our reality. The symptoms of the flu are listed below next to the symptoms of narcolepsy for comparison. Keep in mind, with the flu, these symptoms typically last only 2-10 days, sometimes longer in high-risk populations. In contrast, the symptoms of narcolepsy last forever.

INFLUENZA SYMPTOMS

NARCOLEPSY SYMPTOMS

·         fever ·         excessive daytime sleepiness
·         chills ·         cataplexy
·         cough ·         hypnogogic hallucinations
·         runny eyes ·         sleep paralysis
·         stuffy nose ·         disturbed nocturnal sleep
·         sore throat ·         obesity
·         headache ·         automatic behaviour
·         muscle aches ·         blurred vision
·         extreme weakness and tiredness ·         slurred speech
·         vomiting and diarrhea, though this is more common in children than adults ·         extreme irritability

 

I suspect flu season will forever be a challenging time of year for me now. The barrage of government sponsored ads encouraging people to get the flu shot will surely be a painful prick to my subconscious triggering intense retrospection to the tune of an annoying Celine Dion ballad.


A NOTE TO THE READER: There are two things I’d like to clarify as I’m sure people who are knowledgeable about this topic will be wondering. Dylan did not have the flu shot in 2009 during the swine flu epidemic. He was vaccinated in 2013; however, all flu vaccinations now contain immunization against H1N1. All four of Dylan’s sleep doctors have told me they believe there is a link even with post 2009 vaccines and two of those doctors are currently involved in the research. Dylan also did not receive the Glaxo­­SmithKline Pandemrix vaccine which was administered throughout Europe and linked to narcolepsy. The vaccine used in Canada was Arepanrix manufactured by Glaxo­­SmithKline, which is thought to have the same amount of nuclear protein as Pandemrix.