Every Child By Two: Vaccines for All?

Yesterday morning, "Every Child By Two," created by Rosalynn Carter and Betty Bumpers kicked off its new website and campaign to educate the public about vaccines. A press conference featured actress Amanda Peet, physician Dr. Paul Offit (whose book I reviewed about a year ago,) and Ann Hotez, a mother who has a daughter with autism. The purpose of the website and of the conference this morning is to dispel myths. It was set up as a defense against "the misinformation on the internet."

I was on the conference call associated with the press conference. Although I was unable to ask questions of the panel, I had the opportunity to listen in. To be honest, my main concern was about how parents would be portrayed. I wasn’t necessarily on the call to be "convinced" to vaccinate, for my kids haven’t missed a dose (and in the case of several infant vaccines, have had more doses than the recommended schedule because of an insurance switch.) But given the press releases for the "initiative," I worried about how those of us who have real concerns about vaccines and associated environmental triggers would be treated.

The participants tried to conduct it in a "concerned" (I wouldn’t quite call it "respectful") way, but of course there were some comments that hit me the wrong way, such as how those who worry are "inexperienced" or "misinformed."

I understand the benefit of vaccines. Their creation and affect is amazing. But I wish consideration would be given to those of us who have kids sensitive to environmental triggers. Rather than telling parents who wish to spread out the immunization schedule that they are "unnecessarily exposing their kids to greater risk," be thankful that they are willing to vaccinate at all. Instead, those cautious parents are being considered desperate and naïve.

Not surprisingly, the conference call provoked brainstorming and raised more questions than it answered.  For example, while Dr. Offit remarked that daily life involves more of an immunological load than what our kids experience while being vaccinated, why do children have high fevers afterwards? Why must parents check off a box that says their kids haven’t been sick in the past 24 hours? Vaccines are meant to cause an immunological reaction: it is their purpose. So certainly the body can over-react, just as sensitive kids by definition over-react to various environmental stimuli. Sounds are too loud. Smells are too potent. Textures hurt. Light is too bright.

Last year the San Jose Mercury News reported on a study linking Central Valley pesticides and autism. Earlier this year,  The Lancet cited a connection between artificial chemicals and hyperactivity. It isn’t unheard of that environmental triggers can cause behaviors that are on the spectrum.

That isn’t to say that these various triggers are a problem for all kids; simply that by definition, sensitive kids will be sensitive to particular stimuli.

Likewise, why is an egg-sensitivity considered a "legitimate" reason to skip vaccines, whereas a behavioral concern is not? This is a bigger problem: one that questions how much behavior is under our control. Many people are hesitant to touch this.

Still, doctors prescribe pharmaceutical agents to help conditions, so why is it such a far stretch to consider that similar agents can hurt? After all, there are "side effects" to drugs, why not "side effects" to vaccines?

I don’t blame vaccines for "causing" my son’s sensitivities. But I definitely believe they – and other environmental factors – can contribute to the presentation of symptoms. In some cases, these symptoms may bump up a child into a clinically significant category, and thus "cause" the diagnosis even though the underlying sensitivity was already there. That isn’t to say that all kids shouldn’t be vaccinated, just that if a child happens to be sensitive to these things that perhaps an alternative schedule may be a better idea than having to endure a long-time regression.

My role as a mother of a child on the spectrum is to determine how to best parent him so that he can reach his full potential. This means adjusting the environment as necessary, such as warning him before transitions, having his teacher provide clear rules, and making sure he knows what to expect. This also means adjusting other parts of the environment, like avoiding foods that alter his impulse control. And yes, it means scheduling doctor’s appointments with immunizations for Fridays instead of mid-school week, and the same for dentist’s appointments, since fluoride definitely causes a reaction.

One concern seemingly independent of the vaccine question that I have about the ECBT.org campaign is that if they portray skeptical parents as naïve and misinformed, then how will the public at large view other parenting decisions that we have made? As it stands now, many parents of children on the spectrum (or related sensory-attention-hyperactivity conditions) receive criticism for their children’s behavior.  For example, many heard of the Savage Situation, the recent very public chastising of parents for "overdiagnosis" and being "unable to control [our] brats." If we are considered naïve when evaluating which environmental triggers appear to cause behavioral regression, then do we lose credibility in other arenas as well?

I am glad that vaccines exist. And I do believe that it is important for people to learn about why we have them, but I also think that doctors should appreciate that each person is an individual, and that for some people, altered schedules or other accommodations (such as testing for immunity before a "booster") can be made to avoid negative reactions.  Different isn't necessarily wrong. The end result is the same: the kid has immunity – whether it is by an extended schedule or not.

I am all for education, but not when it poses information as an absolute truth, because medicine and science are evolving constantly. And not when it portrays a whole group of people as "misinformed" simply because they are taking a proactive role in parenting their special-needs child.

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Original Silicon Valley Moms Blog post, Kari also writes at The Karianna Spectrum.