It’s Not my Fault This Issue Won’t Go Away. At Least, Not Only My Fault

Trigger warning: This post is about vaccines.

I start with a trigger warning because the post may affect you in either of two ways:

  1. You may believe your child was injured by one or more vaccines, and reading about the issue may evoke memories, regrets, guilt, even rage; or
  2. You may reject the idea that vaccine injury is widespread or connected to autism, and even reading the suggestion may cause anger and disillusionment with this blogger.

Better news: This post is not about whether vaccines are connected to autism. If you’re dying to know my opinion on that subject, click here.

This post is about perception of the vaccine issue and why, whatever the truth behind vaccine science, I think the tide will continue to turn against mandatory vaccination, at least until changes are made in drug approval, the liability scheme, and the way we discuss the whole matter.

“I Know Someone”

Let’s start with someone who likely falls within category 1, above—“You may believe your child was injured by one or more vaccines, and reading about the issue may evoke memories, regrets, guilt, even rage.” Earlier this year, in California for a doctor appointment, Martin and I decided to expend some energy at a trampoline park. We did not realize that we had happened upon a designated “special needs jump night.” The place was pretty empty, but apparently most of the kids who were there had some form of disability or sensory challenges.

Martin ran off to bounce. I sat on a bench with two other moms. They were discussing IEP’s and, soon, so was I. When one of the moms left, I continued chatting with the other. By then I knew that her four-year-old son was non-verbal and diagnosed ASD. She asked where we lived and what we were doing in California. I explained that my son had also been on the spectrum but now was getting better, and that we were in California to see the doctor who treats the medical aspects of my son’s condition.

That’s usually sufficient to end a conversation, or at least steer it in another direction. I find that ASD parents either reject biomed as impossible based on mainstream advice they’ve received, or else reject biomed because they are too overwhelmed even to consider dietary or lifestyle changes. Either way, they don’t jump to discuss. I thought this trampoline-place mom would fall into the second category; during the IEP portion of our conversation, she mentioned that she was a single parent, that her son’s father was entirely absent, and that she had trouble getting to IEP meetings and other school events. How could she want to add special diets and supplements to her agenda?

God bless her. I can’t fathom the strength needed to walk this path alone.

I was mistaken. She asked to hear more about what treatments we do, and about Martin’s diet. I tried to speak in gentle terms and be encouraging. As I was in the midst of saying that autism has an immune component, the mom interrupted me and blurted, “It was the shots, wasn’t it?”

I asked what she meant. She said, “Something happened to my boy. He got a bad fever after a shot and he wouldn’t stop crying. The doctor said it was normal, but my boy wasn’t the same after that. He didn’t talk anymore. And the doctor told me the shot didn’t hurt him, and that I had to keep giving him shots to stay in Medicaid, so I did, and I saw that he got worse every time.” With tears in her eyes, the woman looked at me and asked again, “It was the shots, wasn’t it?”

Readers, I was at a loss. I hadn’t said a word about vaccinations and did not expect the discussion to move in this direction. What could I say? From the few details the mom offered, it sounded like vaccine injury could be an issue—but no way would I share that suspicion with her. I felt like remorse and desperation had gathered themselves into human form and were sitting next to me.

The mom’s sudden response reminded me of a gym trainer I had two years ago. Training can involve a lot of chatting, and eventually we bumped into the topic of what I do for Martin, and his recovery process. “What do you think causes autism?” the trainer asked. I said genetics and environmental factors. He asked what environmental factors. I implicated unsafe food supply, overreliance on antibiotics, pesticides and pollution, disruption by electromagnetic fields, maybe a few others. The trainer asked, “What else?” I said Caesarian-section births weren’t doing us any favors. The trainer asked, “And what else?” I talked about sterile environments and lack of access to dirt and earth. The trainer asked, “And what else?” I relented and said, “Some people think vaccines are involved.” The trainer leaned close and whispered, “I know. I know all about it. My wife has a friend whose baby was injured. So my wife won’t let us vaccinate our kids.”

I know. I know all about it”—this came from a random 26-year-old suburban New York sports trainer who prides himself on “not reading too much.”

Why the vaccine debate won’t die, exhibit one: Too many people know someone they believe to be vaccine-injured.

“Nope. Forget it.”

On to someone who falls within category 2—“You may reject the idea that vaccine injury is widespread or connected to autism, and even reading the suggestion may cause anger and disillusionment with this blogger.”

This summer, I made a friend, an ex-pat North American already living a dozen years in Nicaragua. She knew about Martin’s challenges, at least his current challenges. (Think social awkwardness and emotional fragility, instead of screaming meltdowns and lack of functional language.) She knew that we follow a restrictive diet and have done various therapies. She did not know about the supplements, antimicrobials, enzymes, probiotics, mitochondrial support, homeopathy, neurofeedback, vision exercises, &c. Those details are reserved for the innermost circle of confidents. Still, I consider this ex-pat a reasonably close friend, and we speak openly with each other about the universe of matters not related to autism recovery.

One evening toward the end of summer, when Adrian already had returned to Nicaragua, he and I went out to dinner with this friend. The conversation was lively; Adrian is opinionated, and so is my friend. The talk turned to politics, and to subjects on which Adrian can see both sides of an issue versus subjects on which he sees no room for debate. (The dinner followed close upon a group of white nationalists parading clownishly around Charlottesville, which is I think how we arrived at the topic of “no room for debate.”) By way of intro, Adrian said something like, “You can debate a lot of things. How to stop global climate change, whether to pacify North Korea, late-term abortion, all the vaccinations—.”

Adrian mentioned vaccinations innocently, perhaps even Pollyannish-ly; his exposure to the topic comes mostly from his autism-obsessed wife, so he may just have been thinking, “Reasonable people can disagree on this one.” But upon the very mention of “all the vaccinations,” my friend exclaimed, “Nope! Not the anti-vaccination people. They are lunatics. [Expletive] lunatics.” No one had said anything about anti-vaccination. Adrian had suggested space for debate around the panoply of vaccinations currently recommended. My friend heard “vaccinations.” That sufficed to evoke immediate condemnation. No room, there, for debate.

Twenty years ago, one of my cats, Linsey, suffered a vaccine-induced fibrosarcoma. She developed a large tumor at the site of a rabies vaccination. I was a law student at the time. I paid for surgery to remove the tumor and then, having expended my savings, borrowed $5,000 from my brother Rudy and flew Linsey to Colorado State University in Fort Collins, where the Veterinary Teaching Hospital was one of the few institutions using electron-beam radiation therapy to prevent tumor return. (This was important because the Linsey’s tumor was adjacent to her lungs, so I didn’t want the radiation reaching beyond the tumor site.) After returning to Connecticut, where I was studying, I drove Linsey every few weeks to Angell Animal Medical Center in Boston for chemotherapy. Miraculously, Linsey survived this ordeal, only to succumb two-and-a-half years later to an unrelated carcinoma. Some cats have all the luck.

Throughout the entire course of these events, no one questioned that Linsey was vaccine-injured. The treating veterinarian, who first found the tumor, said immediately that it was vaccine-related: “I’ve seen a few of these, always at the site of injection.” I was asked to submit Linsey’s vaccination records to track the batch that had induced the tumor. Colorado State made her part of a study on treating these particular tumors. The doctor at Angell talked to me extensively about vaccine injury in cats and special precautions to take going forward. Five or six years after these treatments, long after Linsey had died, a researcher from Colorado State phoned me to track her outcome, for their records.

Of course, Linsey’s experience made me wary of vaccinating my cats. I asked a lot of questions, and veterinarians always took the time to discuss pros and cons with me, like whether exclusively indoor cats really need vaccines, the risks of vaccinating versus developing FeLV, or steps that had been taken to replace the adjuvants suspected in causing sarcomas like Linsey’s.

And when Martin came along, I tried to ask questions about vaccinating him, too. I attended presentations on vaccination, read books and articles. I formulated specific questions, like, “I looked up the contents of each brand of DTaP vaccine, and they all have at least 150 micrograms aluminum. One has more than 600 micrograms. I can’t locate any study indicating that those levels of aluminum injection are safe for a child of my son’s size. Have you seen any?”, or, “It’s hard to get statistics, but from what I have found, the rate of serious adverse reactions to the varicella vaccine might be higher than the chances of a serious reaction to the virus itself. Are we vaccinating in order to eliminate the virus in the general population, or are we seeking protection more particularized to my son?”

Martin’s pediatrician, to the extent she could, dismissed my questions without answer. Though she halfheartedly indulged my decision to do Martin’s vaccinations on a delayed schedule, she showed no interest in my reasoning or research. Instead, she served the usual banquet of platitudes: Vaccines are safe. Vaccine injury is a one-in-a-million occurrence. All theories linking vaccines to autism have been discredited. Until we started biomed, no one involved in Martin’s healthcare agreed to have a realistic conversation with me about vaccinations. A ten-minute conversation with my cat’s veterinarian over whether yearly rabies vaccines are worth the risk? No problem. Even a single disinterested, well-founded response to concerns about my own child? Wasn’t going to happen.

Why the vaccine debate won’t die, exhibit two: You’re not allowed to express a contrary opinion, or even a diversified opinion. You aren’t really allowed even to ask questions.

I Guess I Went to Law School for Some Reason.

In the United States, we have a (much-criticized, and sometimes justifiably so) system of tort law designed to shift resources among private parties in order to compensate victims of injury. If you are hurt—financially, physically, or otherwise—by a private party such as a corporation or a neighbor, you have a right to sue that party and ask to be “made whole.” Example: If your water heater explodes and you suffer burns, you can seek compensation from the company that sold the water heater, on the theory that the product never should have been put into commerce. Example: If your uncle drunkenly rams his car into your garage door, you can sue him for the cost of a new garage door.

In the late 1980s, vaccines were removed from this liability scheme. A law known as the National Childhood Vaccine Injury Act of 1986 established a National Vaccine Injury Compensation Program, or the “VICP.” (The citation is Pub. L. No. 99-660, 100 Stat. 3755 (1986), codified at 42 U.S.C. § 300aa-10 through -34.) Under the Act, the family of a vaccine-injured child no longer gets to proceed directly to a lawsuit (as would a person injured by, say, a pain medication or a statin). Instead, that family must file in the U.S. Court of Federal Claims, against the Secretary of the Department of Health and Human Services. Attorneys within the Office of Vaccine Litigation defend the Secretary.

After some 5,000 cases were filed under the Act seeking compensation for development of autism (this doesn’t surprise me) following vaccination, the Office of Special Masters within the VICP created an Omnibus Autism Proceeding, or “OAP.” The cases consolidated into the OAP ruled against the test-case families and held that vaccines cannot provoke the development of autism (nor does this surprise me).

A family dissatisfied by the outcome of a VICP proceeding may reject the determination and file thereafter in a federal court. In practice, a court is likely to accept a VICP determination of “no injury” as heavily persuasive, if not conclusive. Editorial note: I have no link to back up the foregoing statement about persuasiveness of VICP determinations in subsequent proceedings. The statement is based on my own years of legal practice in cases involving some form of prior adjudication, whether administrative or otherwise. Therefore, the possibility of litigating a court case to verdict and recovery barely exists. Moreover, as to the VICP itself, successful claims, as well as administrative costs of the program, are paid from a trust, which is funded not by vaccine manufacturers but by an excise tax for each dose sold of an included vaccine. Vaccine manufacturers are thereby insulated from just about any form of liability for injuries caused by their products.

Since the 1986 Act, the Centers for Disease Control has “recommended” ever-more vaccine doses. I use quotes around “recommended” because, in a growing number of states, failure to adhere to every recommendation precludes school attendance, military service, even some private-sector jobs. In the past five years, for example, California (with more than 12% of the nation’s population) eliminated personal-belief (including religious) exemptions from school vaccination requirements, joining West Virginia and Mississippi as states that don’t allow any non-medical exemptions. New York (with an additional 6% of the nation’s population) has been adding required vaccines for school, limiting the availability of medical exemptions, getting rid of personal-belief exemptions, and challenging religious exemptions.

The U.S. Department of Justice credits the VICP for virtual cessation of lawsuits against vaccine manufacturers:

A significant, positive result of the Program is that costly litigation against drug manufacturers and health care professionals who administer vaccines has virtually ceased. Although an individual who is dissatisfied with the Court’s final judgment can reject it and file a lawsuit in State or Federal court, very few lawsuits have been filed since the Program began. The supply of vaccines in the U.S. has stabilized, and the development of new vaccines has markedly increased.

Although I searched the CDC website (and the DOJ website, though it would be an odd location for such information), I found no mention of how we determine where, whether, or how many new vaccines are needed, or any gauge for evaluating the benefits of this marked increase in the development of new vaccines.

Why the vaccine debate won’t die, exhibit three: Instead of trusting families to make their own decisions regarding vaccination, our system forces them to vaccinate, creating an overflow market for vaccine products while also absolving the manufacturers from liability if their products prove unsafe. The incentives are—I’ll speak technically here—out of whack.

Our Own Personal Proof?

After Martin was diagnosed with autism and I began to recognize his immune troubles, I fought to keep him in school without further vaccinations. I had his blood drawn for titer tests to establish that he did not need the second MMR shot required for school. Martin’s regular pediatrician wasn’t available, so another doctor from the practice met with me to review the results. A measles (rubeola) titer is considered immune if the IgG exceeds 0.70. Martin’s level was 1.25. A mumps antibody titer is considered immune if the IgG exceeds 0.50. Martin’s level was 3.57. A rubella antibody titer is considered immune if the IgG exceeds 10. Martin’s level was 67.2. Look again at those numbers. Martin’s titers, even without the required “booster” shot, were 179-714% of the levels that establish immunity. The first MMR shot had sent his immune system into a frenzied hyper-response. What would a second shot have done?

“Oh,” said the substitute doctor as he examined the results. “Ah. I think, if you want, um, I think, would you like me to write an exemption from vaccinations for the time being?”

Why, yes, I responded. Yes, that would be nice.

From that day until we moved out of New York City, the substitute doctor became Martin’s regular pediatrician.

Why the vaccine debate won’t die, exhibit four: I still have something to say about it.

Those Doubts Are Gone. From a Mainstream Perspective, I Get Crazier by the Day

Remember my doubts about Heilkunst homeopathy?

Heilkunst is about supporting the body’s natural healing power, allowing its own return to health. I had to go through the dreadful process of enumerating, in reverse chronological order, the many insults to Martin’s immune system, from medications and illnesses to vaccines to home remodeling while I was pregnant. For eight months we’ve done a “clear” every two or three weeks, working backward through what might be hampering Martin’s recovery.

Immediately after we began the first clear, which addressed coxsackie, Martin vomited and woke the next morning with a mild coxsackie-like rash on his hands. Since then we’ve seen what appear to be “healing reactions” of all sorts. Itchy neck. Inner-ear swelling. Tired allergy eyes. More vomiting. ROOS. Ugh, ROOS.

At the same time, Martin has been getting better and better. Seriously, he’s having a homerun 2015. I’ve been “reasonably convinced” the Heilkunst is doing what it’s supposed to.

Time to scratch the “reasonably.”

Our last three clears have been MMR, the H1N1 vaccine, and antibiotics we used when addressing SIBO. The antibiotics actually should have been addressed much earlier, in terms of chronological order; I realized only recently, from reading comments in an on-line group, that antibiotics need to be cleared.

I had a hunch that H1N1 clear would be a tough one. The H1N1 vaccine—why on earth did I fall prey to the unnecessary frenzy over that illness?—was the only injection from which I saw a noticeable difference in Martin, beyond the fever-crying-and-blues we are supposed to accept in a recently vaccinated child. He received the H1N1 shot in November 2009, when he was almost 17 months old. (According to his medical records, a “second” H1N1 shot was administered in January 2010. I have no recollection of that.) The shot was not a bad one, in terms of Martin crying or acting out. Instead, he became very quiet and withdrawn, and then, the same afternoon, I noticed him engaging in repetitive behaviors: moving toddler chairs into formation, stacking them, moving them. It was the first time I’d ever noticed such behaviors. Do I know that the onset of repetitive behaviors was tied to the H1N1 vaccine, instead of coincidental? No. But the timing raises red flags. Plants a whole row of red flags.

So I went into Martin’s Heilkunst H1N1 clear with trepidation. The clear involves three wafers given over three days, and then a two-or-three-week waiting period while Martin’s system works through the effects of the H1N1 shot.

As to what happened, here is the update I sent to Martin’s Heilkunst practitioner following the H1N1 and MMR clears:

With the H1N1, Martin was crabby for more than a week. He also had trouble sleeping and reverted to some behaviors we haven’t seen in a long time, such as uncontrollable perseveration and also verbal stimming (he says “goo-HEN-duh-may” repeatedly, and tries to get others to say it also, by asking, “What did I just say?” or, “Is ‘goo-HEN-duh-may’ a word?”). One afternoon he was super crabby and tired, and at dinner he said abruptly, “Mommy, I need to throw up.” (I feel bad: I didn’t believe him, because he frequently says that when he just doesn’t want to eat, doesn’t want to go to school, &c.) Then he vomited, twice, all over the dinner table and floor. After I got him cleaned up in a bath, he seemed to be feeling much, much better. He asked if he could have dessert even though he didn’t finish dinner, and then he went to bed and slept more peacefully. No trouble after that.

I waited another week and then did the MMR. Martin did not get as crabby, but one night after I bathed him, I noticed a bright red, raised rash on one half of his backside. By morning the rash was gone. Also, one day later he was covering his ears and saying they hurt. I put some Hyland’s earache drops in them, which seemed to help.

Overall, Martin is doing very well right now, with a big increase in conversation skills and some in attention. Socialization remains tough.

I should add that the rash I saw on Martin while we were clearing MMR was a mild measles-like rash. I know, because I had measles when I was 12. (I lived in a semi-rural area where, as far as I know, vaccination rates were near 100%. I caught measles despite being initially vaccinated, and later hit with a booster shot. I’m resisting the urge to make this post about vaccines.) In regard to looking like measles, Martin’s rash was clear and distinct.

Let’s agree on this: I don’t have my doubts about Heilkunst anymore. These wafers are doing something.

Let’s follow up with this: I don’t know how Heilkunst is working, or exactly what these wafers are up to. I know that the principle is “energy medicine.” Each wafer delivers a minimized, harmless form of what insulted the immune system, to help the body recognize and expel the toxin. But how does the wafer acquire that energy? At AutismOne, out of lingering curiosity, I crashed the Homeopathy Center of Houston panel discussion and asked questions. We don’t use the Homeopathy Center of Houston, buy hey, same idea as Heilkunst, right? Or close? The lovely ladies of Houston explained about dilution and formulas and administration and many other procedures, and my little brain left the room as uncertain as ever. I may be violating my own policy of comprehending any treatment before we begin; in the case of homeopathy, I consulted as many parents as I could find and also searched online for reports of negative or adverse reactions to sequential homeopathy. Having found nothing substantial or substantiated, I proceeded.

My online searches did yield studies (and straight-up arguments) concluding that homeopathy in general is bunk, just so much ineffective snake oil peddled at high prices. I took those accusations under advisement.

And now I feel comfortable saying: They’re wrong.

Vaccinations. I’m Ready for the Hate Mail

A couple weeks ago, a message came across my Twitter feed (@findingmykid) telling parents of kids with autism not to blame themselves, because there is no single contributor to autism—no specific action they should or should not have undertaken. I was grateful for the reminder. I do have a tendency to blame myself for Martin’s autism. We had our kitchen rebuilt, clouding the apartment with construction dust, while I was pregnant. I let myself be bullied into induced labor, leading to epidural anesthetic, Martin’s loss of oxygen, and a C-section birth. I fed Martin foods I now know to trigger digestive difficulties. When we had new window guards installed, I put him to bed thinking the paint had dried, only to open the door three hours later and find his bedroom filled with fumes.

And—I chose to have Martin vaccinated. I started out wary of vaccines, from personal experience: I myself was fully vaccinated as a child, including against the measles, and yet at age 12 I contracted measles. Even the health department visited to find out why I’d caught the contagious and life-threatening disease. That experience has always given me pause about the efficacy of vaccination. So when Martin came along, I tried to educate myself. I attended two seminars (these billed themselves as neutral but turned out to be very pro-vaccination), perused some articles, and read the Dr. Sears book. In the end, after talking with Martin’s pediatrician, I decided to vaccinate Martin, but on the Dr. Sears “alternative” schedule, which skips some shots and spreads others apart. I reviewed the ingredients of available vaccines—they were non-vegan and generally disgusting—and requested them by brand, paying especial attention to aluminum content and to the combination of vaccines (I never allowed more than two) given on a single visit.

Still, I had misgivings, long before Martin was diagnosed with autism. I was uneasy with the idea of injecting, into my son, foreign matter including metals, Guinea pig embryo cells, cow blood serum. Are human bodies really designed to deal with that kind of intrusion, particularly by injection instead of ingestion? Each time Martin received a vaccination I left the doctor’s office feeling vaguely unsettled, even if I was unsure why.

It was mother’s instinct, I now suspect.

In 1998, Andrew Wakefield published a paper in The Lancet linking the MMR vaccine to digestive disorders associated with autism. The Lancet subsequently retracted that paper, and last April the BMJ published an article aimed at discrediting Wakefield’s study. That BMJ article was widely reported, and I recall a Facebook friend—damn you, social media—posting a link to one such report, with a tagline something like, “GET OVER IT, MORONS! VACCINES DIDN’T GIVE YOUR KIDS AUTISM!!!”

Yes, it was written in all-caps, the hallmark of any thoughtful sentiment.

I try not to take umbrage to Facebook posts. This one got to me. I think it would have got to me even without Martin’s condition. Facebook does not represent the best platform for discussing controversial ideas. (For example, have Facebook snippets persuaded anyone, ever, to change a political position?) Worse, the words, written by a mother of several neurotypicals, were inconsiderately harsh for someone not facing the realities of parenting a child on the spectrum.

More than the inappropriate forum or lack of empathy, though, was my belief that this Facebook friend was too cavalier.

I’m not going to say that I think vaccines “cause” autism. I’m sure many readers are horrified enough that I acknowledge a possible link between vaccines and ASD, at all; when I told a college friend that we were undertaking autism recovery, her first question was, “Are you going to be like that actress who went crazy and said vaccines made her son get autism?”

I’m not going crazy (and neither was Jenny McCarthy), and I’m not using the word “cause.” But after reading more, and from a wider variety of sources, I think this: Children who are prone to ASD, for whatever reason, share a sensitivity to certain food triggers, to electro-magnetic fields, to chemicals and heavy metals, and in general to foreign substances. And those children, when their sensitive systems are invaded with the gunk that comprises vaccines, react with increased neuro-divergence. Vaccines, therefore, in my entirely un-scientific opinion, do more harm than good to children who already have, or may develop, autism. I also think that some of the highly touted successes of vaccines may stem, in part if not primarily, from general advances in hygiene and health care; that is, bell curves appear to show that some diseases we vaccinate against have decreased at rates similar to diseases we don’t vaccinate against, because we’ve got better at caring for ourselves.

Be warned—here comes the lawyer in me. I am not advising anyone not to vaccinate his or her child, on the spectrum or otherwise. I would never give that advice. I am not a scientist. I freely admit that I do not fully understand all of what I read on topics like the effects of vaccines, and that I do not have the background to discern among competing sources of information. Thinking more globally, I have no reason to assert that, say, malaria vaccinations in Africa or polio vaccinations in South Asian are not a good thing. I have only my own conclusions, for me, for my family.

My law-school roommate asked me if she should stop giving her (neurotypical) children the fluoride tablets their dentist recommended. I answered honestly: I don’t know. I filter Martin’s water for fluoride. I think fluoride is bad for his condition. That’s not definitive. I may not even have the best or newest information. But from what I’ve got, no fluoride for Martin.

I regret, now, that I allowed Martin to be vaccinated. I particularly regret falling prey to the 2009 H1N1 hysteria and getting Martin that vaccine, because it was so wholly unnecessary, and because that was the single instance that I can remember in which my son seemed different after the injection than before. (I don’t have any specifics for that last comment; I can only say that Martin, who was not yet diagnosed on the spectrum, seemed pretty kooky for a day or two afterwards.) After consulting with Martin’s Track Two doctor and Martin’s pediatrician’s practice, Adrian and I have decided to forego any further vaccinations, at least for the time being. I feel far less threatened by hepatitis B than by further neurological damage to our son.