Friday, January 2, 2015

Why We Don't Vaccinate

At the risk of losing readership, I'm going to broach a topic I've avoided here, before. And I have asked my son's permission to post this. Please consider him as you share or comment about this. Here goes:

We don't vaccinate. There. I said it. And we're also - GASP! - gluten intolerant.

Over the past few months my feeds have seen a marked increase in intolerance of gluten-free dietary restrictions, vapid rants by servers and restaurateurs, supposed "proof" that non-celiac gluten intolerance is all in our heads, and the ever-interesting "my kids eat gluten and so can yours" ditties.

Don't even get me started on the vaccines. The rants about non-vaxxers are worse: We're putting vaccinated children and the whole global population at risk, we're harming our children, we're selfishly benefiting from the herd-immunity hard-won by generations of parents who had more sense than we do...

Halt. Let me tell you something about us. Because I am not going to offer you a story supporting one side or another on these issues; I am going to tell you the story of my son: How we became non-vaxxers and what it's like.

My son was born in 2002, by emergency c-section, into the hands of my capable midwife and obstetrician. Despite his rocky start (he was strangling in his umbilical cord), he nursed up a storm, and by 9 months was at 99th percentile for height, and off the charts for weight. He hit all his milestones nearly to the day (my Mum was an infant development consultant, so we watched these with great interest). By 9 months he was super engaged with life and loved all sorts of different foods, excluding, of course, those not recommended for introduction at that early age. At the time there was still much talk about Wakefield's study, so we took the precaution of spreading out and delaying his vaccines. He had his first MMR vaccine at 9 months, along with his third Pentacel.

You keep hearing that age: 9 months. That's because it's when everything changed for us, although we didn't realize it, at first. His reaction to the vaccines was pretty typical: he developed a fever, and seemed to have some kind of flu, which we wrote off as coincidence. He seemed to develop an intermittent diarrhea, which we chalked up to flu-season (it was December/January). Then over the next 3 months he appeared longer and thinner, and was tired and cranky all the time, and I thought he was having an extended growth spurt. At his first-year checkup, when we intended for him to receive his second MMR vaccine, the doctor informed us that although he had grown a little in length, it was not nearly enough, and he had in fact lost a full pound in weight. In just a few months, he fell from an off-the-charts weight to 9th percentile. And we had no idea what was wrong. He was still nursing, he ate plenty, but he seemed to be shrinking before our eyes. That was when our doctor suggested we hold off with the vaccines until his health was recovered.

Over the next couple of years we fed him as much whole grain, meat, fat, fruit and vegetables as he would eat. He had a voracious appetite. He was active, happy, and outwardly apparently healthy - except for the pervasive diarrhea. By the time he was 4, he was into what would become a 9-month-long bout of often-bloody diarrhea. He lost more weight. His cheeks were still chubby, but under his shirt, his ribs showed all the way around to his back, and one of our friends said he looked like he'd been in a concentration camp. He endured many medical tests, and all sorts of food-changes, as we attempted to figure out the cause of his problems. He reminds me, as I write this, that we even kept a bottle of special, pure, store-bought water, just for him. Finally, when he was 4 and a half years old, our doctor asked if we had tried taking him off of gluten.

Gluten? What's that?
Wheat? Oh that would be a pain, but just to be sure, we cut it out. Three days later, for the first time in nearly a year, his diarrhea stopped.

That is when I began reading labels. Gluten was in almost everything. I purged every product that had anything even slightly related to gluten from our home. It took a couple of years to figure out the details of his allergies, and we now know them to be gluten, wheat and wheat-relatives, buckwheat, amaranth, millet, beans (including soy), and eggs. As long as there aren't any accidents, he's fine. Small, but healthy.

But there are accidents. Like the time a well-meaning friend let him help make wheat-flour pie-crust, and he endured three days of profuse nose-bleeding from the flour, or the time I took him out for lunch at a restaurant that was reputed to cater to dietary needs, but then discovered black beans throughout his "deconstructed taco". They shrugged and exchanged his dish for mine, which they assured us had no grains other than corn, no beans, and no eggs... and he went home with a miserable few days of intestinal reactions. In the beginning there were also some disbelieving friends and family who secretly slipped him gluten to prove to us that it's no big deal. But it is. And they didn't have to sit with a crying child at night as his guts wrenched with agony and his body kicked into its inflammatory ultra-immune-response mode to get rid of those "few sprinkles of flour". He tested negative for celiac disease, which at first seemed good, but we have now learned that "non-celiac" is (to some people) alternative language for "a-little-wheat-is-OK", and when we're out we just say he's celiac. This means people generally tell us they have nothing for him.

He's small. At 8, he had a bone scan that determined he was on track, size-wise, for a 5-year-old. Not too bad, they said. It could be worse. The various doctors we've seen don't know what's wrong. They don't know how to help him, and they don't know what caused his growth to curb off the way it did. They can't say for sure that the issues began with his vaccines, but considering the time-correspondence and the immune-related issues, they can't rule it out, either. They are very understanding of our decision not to vaccinate our daughter, who came along just after all of this came to light, and is now a very tall, healthy, unvaccinated 10-year old.

Other people are not so understanding. You know those articles being passed around on social media - the articles that demonize non-vaxxers for compromising the safety of everyone due to sheer ignorance? Those affect us a lot. They increase the likelihood that we will be shunned in social groups, that parents will literally turn away and cover their children as we go by, and that my children won't be allowed to participate in group activities if their unvaccinated status is discovered. We will be outcasts. THIS is why it took me so long to write this article. The word "unvaccinated" does not even register with a spell-check on this computer.

And it's not just in our community, either. My daughter once got a very deep splinter, and after I took it out, I brought her to a walk-in clinic to ask about tetanus. Since she wasn't vaccinated, I worried, and wondered what signs of tetanus I should look for, or whether it would be possible to give her just a tetanus vaccine, instead of the cocktail she would have received as a baby. The doctor yelled at me and my young daughter. He told me (wrongly) that there are no visible signs of tetanus, and furthermore that I was reckless, abusive, and irresponsible. He stomped out and slammed the door, leaving the two of us sitting stunned in the little exam room. My daughter laughs at the memory of "the doctor who slammed the door", but I feel haunted by the threat that we can be refused medical care because of ignorance.

We are not ignorant. Our journey probably means we know more about vaccines, adjuvants, and immunity than most people do. And our children are not a danger to vaccinated children. In fact, our children, who don't have the benefit of vaccines, are more at risk than vaccinated children. We are grateful for vaccines, and for the high percentage of our population who is willing to risk their children's future health (as we once did with our son), in an effort to curb harmful diseases for all of us. We benefit from the risk vaxxers are taking, every day. We are not ignorant.

It is ignorant to ignore that reality. It is ignorant to protect vaccinated children from unvaccinated children, and to spread pro-vax rants all over the internet. In doing so, people ignore the welfare of the part of the population who were harmed in the process of protecting the rest. There are at least a few vaccine-injured children in every community, as well as some, like our daughter, whose parents made an informed choice not to vaccinate, for very well-considered reasons.

It's easy to write off vaccine-injured children as unfortunate collateral damage in our culture's battle against disease, but as long as we don't have to look upon these children's faces, we might not work hard enough to prevent such injuries.

This is the face of my vaccine-injured child. This is his laughter, as the sun shone off the ocean and into our car, one recent winter day. We are grateful every day for the herd-immunity that keeps him and our daughter safe.



Most people don't realize our son has health issues. They see him out walking with his sister and some assume he's a healthy 9/10 year old, tagging along with his older sister. Except he's nearly 13, and is there to keep her safe, because she's only 10. He learned to read complicated words very early, so that he could check food labels, because too many friends' parents and ice-cream servers didn't understand the language on packages. He knows what maltodextrin is, and lecithin. He knows what happens when an adjuvant provokes a strong immune reaction. He remembers the taste of eggs, and longs for them even more than cake, but finds ways to satisfy his longing when everybody is eating eggs and he can't: He loves bacon. He loves climbing trees and riding out to hang with friends. He loves babysitting, photography and animation, and none of these as much as he loves theoretical physics. He's a kid in our community who is walking evidence that non-vaxxers are not freaks, not reckless, and not to be feared. We will never know for sure whether his vaccines made his body the way it is, but we are glad that he makes the best of what life gives him, and I hope we all can do the same, with all of our different lives and the choices we make.

3 comments:

  1. Oof! We are having a similar experience with our youngest son; he's only 3. He got sick at 5 months old and he took about 9 months to go from the 90th percentile to the 12th. I still occasionally get caught with a moment of grief for that chubby baby. I wrote about it here http://whirlingleaves.blogspot.ca/2013/01/where-have-i-been.html. We've had the benefit of an amazing dietician, which I wrote about in that link... there may be something there you haven't heard before?

    I also feel really terrible when friends of mine post comments about those crazy anti-vaxers. I don't identify as an anti-vaxer, but I wish it was possible to have a critical mind about them without being dismissed as crazy. It seems to me that the people who benefit most from the heated polarity is big pharma.

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  2. My daughter had a reaction to an MMR she got at age 4. It was called serum sickness and didn't have nearly the reaction that your son did. I can totally understand not wanting to vaccinate him again. What a horrific thing to have to go through. My brother also has "celiac." He's never been diagnosed, but when he avoids gluten, he's fine. He doesn't have quite the same extreme reactions as your son, but I know that even just a little bit can make him sick for a day. I empathize with you and your whole family.

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  3. What a scary story for your son, I am very glad to hear that now, after you got him off of gluten, that he is doing so much better. That must have been horrifying before you knew the problem. To think, such a big child could become so small in just a few months! Wow. I wish you the best!

    Leonardo @ U.S. Healthworks Medical Group

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