Monday, October 22, 2012

Moms Who Vax: "But I Saw it with My Own Eyes!"

By Karen Ernst

A mother's connection to her children is powerful. She is the first to tell when the baby needs to be fed, the first to know that her child is overtired, and the first to know that something is not going well at school. Logic must dictate, then, that she would be the one who would know all about a child's disorders and conditions, be they autism, epilepsy, ADHD, or what have you. She should know when things went awry, why, and how, surely.

Not so fast. 

While a mother might sense when something is wrong, we do need an objective eye to help us discern exact diagnoses and to help us construct the history of our children's conditions. A mother of a sleepless baby may bring her bundle in and announce confidently that it must be an ear infection, only to learn that her children's ears look healthy and normal. Likewise, when we visit our pediatrician's walk-in strep clinic, I'm always struck by the number of “negative” prognoses that are handed out. How can we all be so wrong so often? In these moments, I usually tell my pediatrician, “You can tell which of the two of us actually went to med school.”

I've known "mom's instinct" can lead us astray for some time now, but this idea was revealed clearly to me after a trip to the zoo that ended with itty bitty bits of strawberries and Pizza Rolls.

We were at the “little zoo,” where treats are sold every few feet to ensure my children leave hyper and sticky. This time, I buckled and bought both boys strawberry popsicles—the kind made from actual strawberries. I patted myself on the back for providing an actual fruit treat. I was a good mom. About two and a half hours after we got home, the boys were hungry for lunch. Because I had made such an excellent treat choice, I okayed their choice for a Pizza Roll lunch. 

Fifteen minutes later, I was punished for my choice when the older one broke out in hives up and down his arms and across his forehead. Unfortunately, our history with hives is bad. This same boy had broken out in hives that turned severe as a result of an allergic reaction to an antibiotic. (As a side note, despite his adverse reaction to an antibiotic, I am not part of the anti-antibiotic movement.) 

I admit that I panicked, but I didn't panic hard. I called and got an immediate appointment at our clinic with a pediatrician I had never met. Not knowing our history, she misunderstand my angst about the hives and gave us a referral to the clinic's allergist. (It turns out that this visit was entirely unnecessary.) In a week's time I would see the allergist, but in the meantime, we had Benadryl on our side.

A week later, we went into the allergist. I am forever grateful that we saw this particular doctor. He was kind and listened to my worries. I told him I was sure my child had developed an allergic reaction to strawberries, but he insisted that the timing made it impossible. An allergic reaction would have occurred at least an hour earlier. I believe I actually said, “But I saw it with my own eyes!” He kindly explained to me that what we see and what we believe need to be supported by science. Fortunately, being a fan of science, I cast aside what I “saw with my own eyes!” and chose to believe him.

But the Pizza Rolls! He ate those fifteen minutes before the hives appeared! Do you know how much stuff is in Pizza Rolls? It's a veritable Who's Who of manufactured food bits! How would we ever parse which ingredient gave him the reaction!

The good allergist assured me that it was extremely unlikely that the boy was allergic to anything in Pizza Rolls. And then he said, “But if you want reassurance, do a little test for yourself. Cook some more and cut them up into tiny pieces. Give your child one piece at a time, and monitor him. If he get hives again, call us.”

I liked this plan! However, I was still unsure about the strawberries. Remember, I saw it with my own eyes. I had constructed my own narrative about what had happened, and it was hard to shake. So I also bought strawberries and cut them into tiny pieces, too. We would do the strawberries one day and the Pizza Rolls the next.

The results? Nothing happened. No hives, no anaphylaxis, nothing. The allergist, and science, were right.

I feel for parents who believe they know what happened to their children, only to have that belief contradicted by science. After all, doing a quick food test purely for my own reassurances was easy. A parent cannot give a child another MMR to see if it makes that child more autistic or another DTaP to see if that child becomes more epileptic.

Nonetheless, when study after study after study after study contradict a parent's instinct or experience, we have to side with the science. Parents are simply not the source of all knowledge when it comes to a child's medical issues. Bring your children to doctors and trust the science that supports what they do. And do not be swayed by another parent's eyewitness account. Sometimes what we see should not be believed.

Karen Ernst is a mother and teacher, and the co-founder of Moms Who Vax.

Monday, October 15, 2012

"I'll Take Thimerosal"

Once upon a time, when I was still misapplying the precautionary principle, I got very hot and bothered around this time of year. I wanted my kids to get the flu shot, but I had heard so many scary things about thimerosal and how certain of the flu shots still contained it as a preservative that I would grow very anxious. I'd call around, making sure the clinic had FluMist (no thimerosal) or an otherwise thimerosal-free vaccine, and I'd feel very proud of myself for doing my "due diligence."  I even advocated on my now-defunct blog Science for Sale for "demanding" thimerosal-free flu vaccine at your pediatrician's office or clinic.

Now I say to nurses: "I'll take the thimerosal version."

My fabulous vaccinated children (old picture!)
Well, that's a bit of an exaggeration--not to mention a bit of plagiarism on my part (co-founder of Moms Who Vax, Karen Ernst, was the first person I'd ever heard say she asked a nurse for "the thimerosal one" just to make a point). But not by much. Last week, my three-year-old daughter had her well-child checkup. I wanted her to get her DTaP booster early, because of pertussis outbreaks in Minnesota and beyond and because signs are pointing to the current vaccine losing effectiveness sooner than expected. She'll get that booster later this week, but I was able to get her chicken pox booster and her flu shot at this appointment. When the nurse came into the room with the syringes, she looked at me and said, almost apologetically, "We don't have any thimerosal-free flu shots right now." To me, this was about as meaningful as hearing at Starbucks "I'm sorry, we're out of whipped cream today."

It was only later that night that I marveled at how far I'd come since those days at the Target clinic when I fretted over my older child's flu shot. I've come so far because I finally understand how vaccines actually work, how their components work in our body, and how leaving my child even a "little unimmunized" is a serious health risk--one I'm no longer willing to take. (Risk analytics is a subject I wish I'd studied up on earlier in my parenthood.)

For those who don't know, thimerosal is a preservative meant to keep the vaccines safe. If vaccines didn't have preservatives, then you'd really start seeing some "vaccine injuries." The CDC states that thimerosal is "added to vials of vaccine that contain more than one dose to prevent the growth of bacteria and fungi in the event that they get into the vaccine." If you've been following the news, you are probably keenly aware that fungi in injectable medicines is a bad thing--just ask the hundreds of meningitis victims trying to get well right now. However, thimerosal is in almost no childhood vaccines anymore--not MMR, not DTaP, not Hep B. The multi-dose vial of flu shot is really one of the only shots that might contain thimerosal.

When people express concern about thimerosal, they often use the overarching term "mercury." These same people (and I was one of them) almost never know that there is a huge difference between ethylmercury and methylmercury. Some of us (ahem, me) didn't even know there was a difference at all. Even though they have similar names, they are completely different materials. Worth repeating: completely different materials.

The one that people often think of when they hear the word "mercury" is methylmercury. This is the stuff that can be found in certain types of fish, formed in environments where mercury metal exists. High levels of methylmercury can be harmful to the human nervous system, and although federal standards try to control the level of mercury in foods and environments, the truth is we are all exposed to some methylmercury. It's this--methylmercury--that too many people think is part of the thimerosal preservative.

It's not.

The multi-vial dose of flu vaccine contains trace amounts of thimerosal, which contains ethylmercury, which does not "build up" in your body like methylmercury and is easily excreted. It is worth repeating that methylmercury and ethylmercury are different chemical compounds. As the WHO states, "The half-life of ethyl mercury is short (less than one week) compared to methyl mercury (1.5 months) making exposure to ethyl mercury in blood comparatively brief. Further, ethyl mercury is actively excreted via the gut unlike methyl mercury that accumulates in the body." If you need any reassurance or your own personal "chelation therapy" following a visit to the National Vaccine Information Center, take a look at this study from the New England Journal of Medicine that shows ethylmercury having no neurological effect on children who received vaccines with a thimerosal preservative. (There are two more.)

But this is mostly academic, because thimerosal was taken out of the vast majority of childhood vaccines a while ago at the request of the CDC. This wasn't because thimerosal is dangerous. Instead, it was done--against the protests of science-minded organizations--because the CDC feared the anti-vaccine movement had simply poisoned too many minds in their completely erroneous and harmful accusations of some sort of link between thimerosal and autism. The CDC removed thimerosal from vaccines as a preservative because they wanted parents to continue vaccinating and were afraid that the misinformation about it was too entrenched. It was the first time in recent history that science bowed to pseudo-science in this way.

So when I get my flu shot without even wondering if it contains thimerosal or not--when my child gets a flu shot that contains it, even though it's becoming harder and harder to find a thimerosal-containing flu shot--a little part of me feels like I'm standing up for science. Because I am.

Tuesday, October 9, 2012

Moms Who Vax: Why Am I So Certain?

By Gillian Tarr

People who don’t vaccinate their children intrigue me. If I knew any personally, and was on good enough terms to have a frank discussion, I would be so tempted to put them under a microscope and try to understand where the wires had gotten crossed.  Perhaps that’s why I don’t know anyone who’s ever admitted to me that they don’t vaccinate their children.

Being a typical 21st-century denizen of the Internet, I’m aware of the wide variety of arguments often used against immunizations.  Whether they’re being spouted by some swindler trying to sell garbage to bamboozled parents or by the bamboozled parents themselves, I haven’t yet read a line I would buy, and certainly none I would stake my children’s lives on.  
Gillian and one of her daughters.

Why am I so certain?  You see, I’m not just the lucky mommy of two amazing little girls.  My first passion in life was infectious disease epidemiology, and I’ve had the great opportunity to work directly with vaccine programs. I also have a Masters degree in epidemiology, as well as a graduate certificate in vaccine science and policy.

My education and all the reading required by my training and the original research I’ve conducted left me assured that immunization was one of the greatest triumphs of public health.  So when it came time to vaccinate my own children, I didn’t hesitate.  I was that parent making the special appointment to get my daughter Prevnar 13 when it came out despite her having already completed her series of Prevnar 7 (protection against six more strains of Streptococcus pneumoniae!). I was that parent convincing our pediatrician to give my 22-month-old daughter FluMist off-label (higher efficacy than the inactivated vaccine in children).

While I made sure my own family was as protected as we could be, I didn’t start paying much attention to the anti-vaccine movement till I was working on a phase 4 vaccine trial with a state health department. Part of my job was to telephone pertussis cases and potential pertussis cases. I talked to hundreds of families.  Anyone can find a website with a description of what pertussis does to a person, but hearing it first-hand was a completely different experience.  Parents described how their children had suffered, and how they felt powerless to help them.  Some even openly lamented their previous choice not to vaccinate their children.  Having my own children, I can’t understand how some parents can set their children up to suffer, leave them open to preventable diseases.

But of course, they think they’re saving their children from something worse. There are so many websites, blog posts, Facebook rants on one side or the other.  Almost everyone claims they’ve read "the literature" and that “science” supports them. Of course there’s also the conspiracy theory folks who purport the published literature is filled with lies and everyone’s in Big Pharma’s pocket. If these people knew how vaccines are developed and studied, they would realize they’re talking about thousands and thousands of people that would have to be paid off.  People like me.  I won’t even go into how little folks in public health are paid...

If you’re making a potentially life-or-death decision for your child, whom do you trust?  Do you trust the random blogger who pulls out choice sentences from studies to prove her point but neglects the rest of the study that negates it?  What about the folks that list dozens of animal studies on some vaccine your child wouldn’t even receive?  Dr. Bob Sears, whose only credentials as a vaccine expert are of his own making?  Are you reading the literature yourself and substituting your understanding of it over that of the specialists who’ve devoted their lives to science and the analysis of scientific research?  Do you dismiss the advice of the CDC, the AAP, and the doctors and researchers who have devoted their lives to understanding and improving vaccines?  If so, why?

When did the experts become the ones you can’t trust and the amateurs--many of whom are just trying to sell you something—become the ones you bank your children’s lives on?  

On the rare occasion that I do discuss vaccines with someone, I don’t try to convince them that vaccinating is the right choice.  I simply give them resources so they can see for themselves what the true experts say and try to point out the difference between the consensus of the scientific community and the opinions of a few.

Gillian is the mother of two glorious little girls and trained as an infectious disease epidemiologist. She currently works in the private sector but remains passionate about public health.

Tuesday, October 2, 2012

Moms Who Vax: Your Baby's Best Shot

By Karen Ernst

The concerns parents have about vaccines could fill a book.  Fortunately, a new book co-written by Stacy Herlihy (SH) and Allison Hagood (AH) addresses these concerns.  Meticulously researched and exhaustively documented, the facts in the Your Baby’s Best Shot are actually presented in a readable and accessible way.  The unassuming tone is no surprise as Herlihy and Hagood are a thoughtful, intelligent pair.  Moms Who Vax recently sat down with them (via email) and picked their brain about a few issues related to YBBS and to vaccines in general.

MWV: What motivated you to write Your Baby's Best Shot?

SH: For me personally it was extreme frustration with debating with hardcore anti-vax nuts online. I’ve been involved in a few parenting message boards over the years. Parenting can be a very lonely experience sometimes, especially if you work at home as I do and don’t always have time to get out much to interact with other parents.

So I became involved in a few boards over the years. Over and over again I’d see this issue come up again and again. I become known after a while as someone who could confront the nuts and help others make sense of this issue if they were on the fence.

The problem was that after a few years I felt as if I were repeating myself time and again. I would write out these very detailed posts only to have them ignored by the anti-vaxxers who would then accuse me of being crazy and over the top on this issue.

So I said to hell with it, walked away, stopped posting and said hey I’ve always wanted to write a book. Why not? But the book was too daunting a project to face alone. So I sought out a co-author. Luckily I found just the right person to work with.

AH:  I’ve been having discussions about this particular issue for a number of years.  I got involved because a friend’s child was diagnosed with autism, and our mutual friends immediately began blaming vaccines.  I thought to myself “that doesn’t sound right,” and started looking into the science.  The more I read, and the more I learned about the lies and misinformation of the anti-vaccine movement, the more passionate I became.

I began to have more online and face-to-face conversations with people about this issue, and realized how widespread the anti-vaccine misinformation had become.  I felt that this was going to be an ongoing battle against people who have no compunction using lies and frauds to manipulate people.  It is incredibly unfair for the anti-vaccine movement to mislead parents about vaccines.

But I didn’t have an idea of writing a book until I “met” Stacy.  We were members of an online discussion board on which vaccine discussions had taken place regularly.  She threw out a “I should write a book!” post, I sent her a private message, and here we are two years later with a book of which we are both very proud.

I love educating people, so the book is a natural existence of that love.

MWV:  Which section of YBBS brings you the most pride?

SH:  The one where we call out the bad anti-vax websites. I had so much fun with it. People like Barbara Loe Fisher and those who run the Age of Autism really annoy me so much. Their websites look so convincing to anyone unfamiliar with this issue. I’ve spent hours trying to explain to people online exactly why they aren’t.

Figuring out polite ways to call them names was both challenging and fun. And hard to get past our editor. Lol

AH:  It’s difficult for me to pick out just one section!  I am very proud of the fact that we managed to communicate the decades of science that supports the safety and efficacy of vaccines in a way that a parent with little to no science background can understand it.  As an educator, that’s always a win.

MWV:  At the beginning of YBBS, Stacy describes a moment in which she is sure she made the wrong decision to vaccinate her child.  Was there an a-ha moment that convinced each of you that, in fact, vaccines were the right choice to make?  What tipped the scales in favor of vaccines?

SH:  I’ve always been pro-vaccine personally. I don’t think you can study history and not feel that vaccines are pretty much the greatest thing ever. I think people today are simply unaware of just how high infant mortality rates were until fairly recently. You can’t read anything about childbearing prior to the last 50 years and be unaware of it.

AH:  I’ve never been anti-vaccine, so there wasn’t a point at which I changed my mind about them.  The tipping point for me getting involved in this issue was encountering the incredibly anti-science propaganda used by the anti-vaccine movement, and realizing that I could address it on a large scale.

MWV:  Do you believe that parents would blame vaccines for autism, ADHD, learning disabilities, and other issues if the anti-vaccine movement were less prominent?

SH:  I think that makes sense. The vaccine equals autism still gets a lot of play in the media today unfortunately.

AH:  I absolutely do.  The anti-vaccine movement is luckily very small, but they are incredibly vocal, and the media has done a great disservice by providing them a platform in the name of a false “balance.”  The overwhelming scientific consensus, based on the research, is that vaccines are safe and effective, and continuing to cover the anti-vaccine movement as if it were of equal strength creates a false controversy

MWV: Which anti-vaccine figure do you believe has done the most damage to public health?

SH:  Andrew Wakefield hands down. He has constantly lied to the public and still continues to do so. He was the driving force behind the first allegation that vaccines and autism are linked. He continues to push that meme forward even though even he must know by now that he’s wrong.

AH:  For me, it’s a toss-up between Andrew Wakefield and Jenny McCarthy.  Mr. Wakefield is either delusional (if he continues to believe in a link between vaccines and autism), or a psychopath (if he knows that there isn’t, and continues to mislead distraught parents). McCarthy, on the other hand, uses her celebrity to provide this charlatan a public voice, and that is almost as damaging as Wakefield’s lies.

MWV:  Since YBBS has been published, has anything about the anti-vaccine movement and the pro-vaccine push back surprised you?

AH:  One anti-vaccine advocate created a hate page against me on Facebook, before the book was even published (the page was removed). I suppose I shouldn’t have been surprised, but that was a bit unexpected.

MWV:  What piece of advice would you give to pediatricians and pro-vaccine parents in their dealings with vaccine hesitant parents?

SH:  I think it depends on how deep that goes. If someone is extremely anti-vaccine I personally think there’s little you can do to change her mind. There’s a hardcore of parents out there who will never believe that vaccines are anything but a great-big-giant-lie-promoted-by-the-pHARMashills. You can’t reach them. You can only avoid them.

We didn’t aim to. Some walls you can’t break down.

Then you have people who are a little on the fence about this. They may want to avoid a few vaccines or stretch out a schedule. Those people I think can and should be reached. The best way to do that, at least in my opinion, is to carefully point out the problems with avoiding such vaccines or demonstrating that a prolonged schedule does not reduce the risk of a vaccine reaction and does increase the possibility of getting a vaccine preventable disease.

Give them good information that treats them like smart human beings and they will listen to you.

AH:  Try to determine what kind of hesitation they have.  If they are committed anti-vaccine activists, there probably won’t be anything that you can say to them to change their minds.  The ability of the dedicated anti-vaccine advocate to dismiss all science that doesn’t support their beliefs is indefatigable.

However, if they are truly hesitant, because they’ve “heard some stuff” about vaccines, then I think spending the time to find out the source of that hesitation can bring about the opportunity to address their concerns.  You might not be able to address their concerns adequately the first time you have that conversation, but I believe that continuing to address it can be successful.  I’ve had several experiences with parents who were initially anti-vaccine, but later realized their fears were unfounded based on ongoing discussions.

Of course, each pediatrician is going to have to decide how much time they have to spend doing this kind of education.  The health care system in this country doesn’t allow for a huge amount of time for each patient, unfortunately!  That’s why it’s so critical that we not just expect this education to come from pediatricians.  The rest of us need to get more involved in addressing and debunking the anti-vaccine propaganda, and holding the media accountable for providing the anti-vaccine lies a platform.

MWV: Do you have any plans for follow-up books?

SH:  We are in discussion about a new book that would address other parenting related issues such as breastfeeding in a similar manner. Once I can get my sixteen month old to get on a more regular sleeping schedule I’d like to think about crafting a new book proposal. That’s probably next year’s project.

AH:  We are discussing ideas about a follow-up, addressing things like birth issues, breastfeeding, attachment parenting, homeschooling, and other aspects of raising children.

Interview by Karen Ernst, mother, teacher, and co-founder of Moms Who Vax.