I read this article on doctors increasingly ‘firing’ patient families for refusing to vaccinate their children (due to autism fears and the like), and... I knew I’d have to blog about this. But first I have to tell you that I’m not a middle-grounder on this subject. Not anymore.
I was positioned squarely on the vaccination debate fence when Kaspar was a newborn; I knew some people choose not to vaccinate, and that there are questions around potential connections between vaccinations and autism. But I also knew that most people do vaccinate their kids... and that diseases like the measles have been all but eradicated from the developed western world as a result of it. I knew that there are strong arguments in each camp, and that proponents from both sides discredit the other as dangerous with a capital D. When it came down to a pediatrician jamming syringes into my new baby’s thighs, however, I felt deeply torn, because ultimately I didn’t reallyknow much. Measles versus autism? That’s a parental sucker’s choice if ever there was one.
I turned to our pediatrician for guidance. She had the time to really investigate this stuff, after all, right? That was her job, right? My new job as Mommy had me pulling all-nighters, neck-deep in diapers and dizzy with all there was to know, do and decide. I looked Kaspar’s new doctor right in the eyes and asked her if there were any sliver of a doubt in her mind around vaccinations and their safety. She assured me that she was doubt-free, and even layed out an alternative vaccination schedule that’d deliver Kaspar his required shots within his first year while providing some extra buffer room between them. Her confidence was reassuring, and we moved ahead with that plan.
Fast-forward a few weeks, when Kaspar-- who’d been suffering from pretty bad reflux up to that stretch, but continued gaining appropriate amounts of weight-- developed full-body eczema. We were told we’d have to wait out both issues, that since his weight-gain counted for a big check mark on a chart, his health was perfectly fine. The reflux did subside somewhat, but Kaspar’s skin did not calm down. He tore his face up from the time he was tiny, even with baby-mittens on. As soon as he could bust out of his swaddle at four months, it was all over; any semblance of sleep that we’d scored was instantly gone. The kid was seriously uncomfortable, and covered in raw, red rashes that-- no matter what combination of milks or lotions or myriad adjustments we tried-- would not let up. He was a happy, fat, wonderful baby, but he was simultaneously tortured by something that his doctors (we moved from Brooklyn to Austin when Kaspar was six months old, and found a new pediatrician here, obviously) couldn’t offer anything for. Eczema-- like, coincidentally, food allergies, and, yep, autism-- are medical mysteries. That our baby scratched himself constantly didn’t seem to phase anyone during his well-visits, however, since-- check, check, check-- he kept up on all of the charts just fine.
After Kaspar’s round of nine-month vaccinations, his condition went from bad to worse. Much worse. A rapid-- as in, within 24-hours of those shots-- downward spiral had us all in agony. We got about three (non-consecutive) hours of sleep each night. We had to pry Kaspar’s hands away from his body for hours on end, trying to sing to him, distract him, calm him. He threw up a lot. We pushed forward, going to our jobs, getting together for playdates, trying to live as if things were normal. But they weren’t. Things weren’t normal at all. At Kaspar’s one year well-visit, Kaspar once again got the clean bill of health, but our relationship with our pediatrician began to change at that visit. I pointed out the obvious: he was covered in eczema. I said we needed some help.
We ran allergy tests. Many of you read along as this all went down. You remember: everything came back positive. Again and again. We went to an allergist. He gave us pamphlets on eczema, ignored my questions and utterly dismissed our observation (which was clear as day) that Kaspar’s symptoms had all worsened right after his nine month shots. The allergist instructed us to put steroids on Kaspar’s skin. He admitted (when I pushed the question) that steroids carry with them life-threatening side effects, but couldn’t tell me where he line between safe and unsafe was. At all. In fact, he couldn’t tell me much of anything, and was obviously irritated by both our observations about Kaspar’s condition, and our questions about what we were discovering (food allergies, etc). We saw this doctor twice (the second time right after a trip to the ER after Kaspar went into anaphylaxis; the doctor had conveniently neglected to mention that lentils cross-react with peanut allergies), and each time for a brisk ten minutes after which I felt anything but empowered or educated in order to help make my child well.
I told our pediatrician exactly this. And although she knows very little about food allergies-- not that the allergist actually knew much more-- she was, well, open to a different kind of doctor/patient relationship than forms very often these days (in fact, it’s exactly the kind of relationship that these doctors who are ‘firing’ their patients do not want to have). In recognizing and acknowledging both the unusual (although increasingly common... these hyper-allergic kids are popping up in the US and Europe at scary rates... as are, coincidentally, autistic kids) nature of Kaspar’s situation, as well as the limitations of her own scope of practice, Kaspar’s pediatrician strayed from the usual autocratic practitioner’s approach and entered upon a more interactive one. When I email her with questions, or requesting referrals, she gets back to me directly. When I showed up with Kaspar at fifteen months, all but eczema-free, and told her about how we’d been working with a naturopath and TCM practitioner, she said, “Wow, okay. Stick with that.” And when Aaron (my hubby... who, by the way, was pretty pro-vaccination from the get-go) and I told her that, whether the allergist wanted to believe it or not, we knew that Kaspar’s nine-month shots had skyrocketed his symptoms-- and that we didn’t intend to continue with vaccinations until all of this got sorted out-- she agreed that this seemed like the best thing, for Kaspar, for now. Although her training, like all Western doctors, is in treating symptoms through prescribing medication-- and administering shots just like the FDA says to do-- she has the presence of mind, and flexibility of thought, to respect and appreciate that we, Kaspar’s parents, want what’s best for our kid, and are in a far better position than any doctor (who’s known him for a total of half an hour) to notice what works and what doesn’t.
I have also undergone a shift from being a passive, deer-in-the-headlights brand-new parent to a proactive, investigative, and assertive participant in my son’s (and my own, but that’s beside the point) total health and well-being. When it comes to gaping wounds or near-emergency situations, I turn to western medicine, and it’s the best. But when it comes to food allergies, it’s not helpful. Western medicine has been first to admit this, too, which, although at first terrifying, has been an enormous blessing; I’ve learned a lot about how many alternatives are out there, and how much the body can heal and balance itself when approached as a whole, working system.
Our pediatrician’s office, like many of the practices cited in the WSJ article, has a vaccination policy. Officially, families that don’t vaccinate aren’t accepted into the practice. We, however, get a free pass. This is because, technically, Kaspar’s not unvaccinated. At nine months, he was up-to-date, and (although they made him sick) our ped says he got the important shots. He won’t catch the stuff that’d kill him. It’s also because, however, our pediatrician took seriously my reservations around provoking Kaspar’s already-whack immune system. Allergies are, after all, the body launching an immune-system attack on what should be harmless substances. Vaccinations, meanwhile, are in fact designed to create an immune response against de-activated pathogens (so that the body has the antibodies to fight the pathogens in the event they show up for real). Not a great combination. Not in our case, anyway. I don’t think Kaspar’s vaccinations caused his food allergies, per se. At least, they didn’t cause the underlying cause... whatever that is was there. But I do think they made the whole situation much worse. I think this because I saw it. The allergist may not have believed it, but moms know.
Doctors may roll their eyes at parents who worry over mercury in shots, because the mercury has, for the most, part, been removed (do ask about other heavy metals, if you’re asking... and preservatives... do ask). And yes, hype around metals in shots causing autism has been shown to be largely unfounded. (But no one’s really sure what causes autism, or what might aggravate an underlying susceptibility to its appearing). Even so, concerns around vaccinations aren’t outdated or naïve. Our initial pediatrician told me she had no doubts around vaccinations’ safety. Yet some small percentage of many of the standard vaccinations’ recipients experience side effects like seizure or coma (this is all listed on the FDA website). The percentages are small, but these shots aren’t risk-free. Whether the risks outweigh the benefits (or are more worth taking than, say, flirting with the measles) is a real decision parents must make. Doctors should respect and honor the weight of that decision, and consider that medical science is ever-developing, and ever eating its words. Doctors are supposed to serve their patients, not condescend to them or dictate how decision-making goes down.
As for autism-- it’s been recently redefined from a cognitive disorder to a spectrum of biochemical afflictions, commonly including food allergies, digestive and sleep disturbances, and eczema. Kaspar definitely doesn’t have autism, but I’m interested in autism because of these common threads, because more and more parents are faced with each of these challenges each year, and because doctors have no idea why. As the WSJ article touches on, many doctors have dismissed parents’ observations that their kids showed signs of developmental regression after receiving vaccinations (one mom in the article was ‘fired’ upon refusing to continue vaccinating her child-- who’d also suffered from gastrointestinal problems-- for this very reason), asserting the correlation is founded only in coincidence of timing. It seems dangerously neglectful to me that doctors would dismiss any parental observation around conditions that so little is known about.
Kaspar’s naturopathic doctor, who specializes in pediatrics, agreed with our decision not to continue vaccinating, as well; she cautioned that continuing to vaccinate could result in autism-spectrum symptoms. Whether or not these conditions-- food allergies, GI stuff, autism-- are all related (and I strongly suspect they stem from some common systemic problem that, for some kids, vaccines do stir up), I’m not willing to test the theory. Kaspar’s thriving, and has been for some time, but it was an uphill battle getting him here.
We recently visited an allergist (a new one) for the first time in almost a year, in order to re-run some tests and see if anything’s changed (I’ll keep you posted over on Alt-Mama); we were again handed pamphlets on Epi-pens and eczema, and I established pretty quickly that we intend to dig a little deeper than, perhaps, the average patient. The doctor said, as they do, that there’s no cure for food allergies and that they don’t know why so many kids are developing them, and I asked if they address the GI tract at all in the kids they treat at his practice (80% of the immune system is located in the digestive tract). He said, “No, why would we? Allergies are an immune problem.” I left well enough alone-- we’re turning elsewhere for real help and change-- but this was an important reminder to me that, well, doctors don’t know everything, even if they know a lot about some things, sometimes. It’s crucial that doctors remember this, too. When it comes to our own kids, we’re the experts-- and, whether our kids have health ‘problems’ or not-- the doctors who we bring them to should be interested in, and take account for, our insights, observations and experiences of our childrens’ health.
As far as the big-picture vaccination debate goes, i.e. whether people who don’t vaccinate put the whole population at risk etc. etc., I don’t have a position. I’m scared of the measles, too (I think). I do, however, have a position on this (from the article): “As patients have become savvier and more willing to challenge doctors, physicians have become increasingly reluctant to deal with uncooperative patients... In addition, doctors may feel financial pressure to see more patients and so have less time to contend with recalcitrant ones.” Excuse my veiled French, but eff that! This represents so much of what’s backwards about health care in America. Patients should be savvy about their own health! And doctors should be able to spend the time treating people, not just symptoms. That means knowing that much of what they dispense (x medication) can actually make people sick ( y and z side effects). These conversations can't be one-way. Because our pediatrician has been willing to work with us as a member of a Kaspar-health team assembled by, and including, us, not to mention practitioners whose knowledge at once differs from and complements her’s, Kaspar is healthy! That, as his doctor, should be her primary concern. Had she insisted he continue receiving vaccinations, and had I felt pressured to follow her lead, he could very likely be doing very badly right now. But I doubt we’d have gotten to that point. I’m pretty sure I would have ‘fired’ her first.
What do you think about doctors ‘firing’ families who don’t want to vaccinate their kids? Did, or do, you feel conflicted about vaccinating? What’d you end up doing? How interactive is your relationship with your pediatrician?