Friday, August 5, 2011

A Parent's Story of Vaccine Reaction

Among the vocal anti-vaccine arm of the autism community, a very common story is that of a parent who brings their child to the pediatrician’s office for their routine shot, and then, BAM!, like a bolt of lightning, the light goes out of their child’s eyes and they regress into autism. Right then and there, the parent decides that no vaccine needle will ever touch their precious, “broken” child, nor indeed any of their children, ever again. Not only that, but they may be so affected by the experience that they encourage other parents to forgo immunizations for any child. At least, that’s how the story goes. More often, the timeline is more gradual, and the emergence of an anti-vaccine perspective slower, building as they read more and more material which plays on their fears and appears to confirm what they suspect: that each and every vaccine on the recommended schedule is nothing but a ticking time bomb waiting to steal children from their parents.

Well, this got me to thinking about those parents whose children had experienced an adverse event following a vaccine. What about those parents who, like many of those on the anti-vaccine side of things, have gone through similar emotions and fears, yet came out following science and reason and chose to continue to support vaccination as a means of protecting both individuals and society. They are not nearly as vocal, so their stories are seldom heard. Certainly, there must be some out there who were willing to tell their tales. Putting out the word that I was looking for these accounts, I received an email from one individual, who had been thinking about telling her story for some time. After careful thought and consideration, she agreed to let her narrative appear on Harpocrates Speaks. Without further ado, here is her story, in her words:

I’m an older mom. Old enough that I’ve got one of those funny round marks on my shoulder from the smallpox vaccine. My husband is a little bit younger, and he doesn’t have one. I have two children, born just over two years apart: an older girl and a younger boy. We live in Southern California.

I am also a PhD chemist. Although it’s not my current career path, I have formerly been employed in pharmaceutical research: drug discovery for both a big corporation and for a small biotech startup, but never involved in vaccine development.

At my daughter’s 4-year physical, her pediatrician and I discussed which vaccines were due. Since at the time the schedule recommended by the AAP called for MMR, Varicella, DTaP and Polio to be given as 4 separate injections between 4 and 5 years old, we decided to go with MMR and Polio right away and DTaP and Varicella the following year.

One year later, at the end of my daughter’s 5-year physical, she underwent a capillary blood draw (I’ve forgotten what it was for; it might have been lead exposure), followed by the DTaP and Varicella vaccines, all done by the nurse after we were done talking to the pediatrician and had been given the Vaccine Information Sheets.

Standard operating procedure for preschooler’s vaccines at the pediatrician’s office in those days was that the child sits on the parent’s lap on the exam bench during the injections. My toddler son was playing with the exam room truck on the floor at the time. Immediately after the injections, as the nurse was returning the syringes to her little tray, my daughter, still sitting on my lap, thrashed – her arm narrowly missing my head — then her eyes rolled back and she became unconscious. I managed to lay her down on the bench without dropping her, and the nurse brought the pediatrician back into the room. A few moments later, my daughter came to, finding both her doctor and her mom hovering over her (I asked her if she knew who was president; I should have been asking who was her favorite Disney Princess).

We followed up with an EEG which was normal.

The Vaccine Information Sheets (I have kept at least one copy for each vaccine my children have received; they’re also available online) lists the risk of seizures following DTaP as 1 in 14,000. Did my daughter suffer a seizure as a reaction to DTaP? It’s hard to say for sure. Was it really a seizure? The pediatrician was out of the room and the nurse had her back turned when it happened, so neither can make that call one way or another. There’s no question that she became unconscious. Did the DTaP actually cause it? Or perhaps the Varicella vaccine, or the capillary blood draw a few minutes earlier, or was it a totally random event? All I know for sure is the timeline (pretty much right after the injections), and that she’d never had that happen before and it hasn’t happened since. So far, the only vaccines my daughter has had since her reaction are flu vaccines - one injected and one inhaled. Nothing out of the ordinary happened.

I spent some time poking around looking for information to help me understand what had happened. I read what I could from the public library and any articles I could access for free online (out of the industry, I no longer had easy access to full journal articles). As my son’s 4-year pediatric appointment approached, I began looking harder, since I knew he was due for that same set of vaccines: Polio, MMR, Varicella and DTaP. I needed to determine whether or not DTaP was safe for my son in light of what happened with his sister.

This is where literature searching failed me. I never found “the one” magical study that would have laid my fears to rest. I found a lot of information, little of it useful. Most studies deal with infants up to 24 months, not 4 or 5 year olds. Family histories have been studied in the context of febrile seizures, but not (as far as I could tell with access only to the abstracts) the kind my child suffered. I wish someone would publish a follow-up on families who have suffered vaccine reactions. I’d like to know if there is a genetic component to adverse events, or if it’s just random chance. Or (more likely) which ones are column A and which are column B. But I’m not even sure whom to contact to suggest such a study.

In the end, this is what I was confronted with: my daughter had apparently had a bad reaction to either the DTaP or Varicella vaccine. When I had to decide whether or not to vaccinate my son, there had been over 400 cases of pertussis reported for the state of California for the year. The final number for 2010 totaled 1124 cases, the most in half a century. There were cases reported in our local schools—not the ones my children attend, but in those whose students attend the same activities (i.e., gymnastics classes, Little League, swimming lessons) at the same places as my kids.

How do I make this decision? Risk seizure, or risk pertussis?

The bottom line: I would never have forgiven myself had my son suffered through the “hundred day cough” of pertussis because I was afraid of the vaccine.

I make sure my son holds my hand crossing parking lots because he’s still too little to be seen through a rear view mirror: I protect him from getting run over. How could I not protect him from disease, if I have the chance to protect him?

I’m still not sure what we’ll do when my daughter needs her next booster for tetanus and pertussis. It’s still quite a few years off (eight years, if we go by tetanus numbers). When the time comes, we’ll look at the risks—both for vaccine, specifically for her history, and the risks of encountering the disease. And no matter what we decide to then, I’ll make sure she understands how to assess her own risk—without scaremongering in either direction.

As for my son: how did he react to his 4-year-old vaccines, including DTap? The only reaction he had was that within hours, he complained his leg (the injection site) hurt and kept asking me to carry him around for the rest of the day. And since I’ve had my fair share of tetanus shots, and I’m a bit of a sucker when it comes to my kids, I did.

Looking back, I'd probably go through the same course of action. And I will have to do it all over again when my daughter is due for her next DTaP booster (although by the time it's due it may be TDaP). I'd just like to reiterate that I agree that more research is needed. But it's not the research that the most vocal people are crying out for. What's needed is a retrospective study follow up of cases in the VSD.

Though I have never personally been in this situation with a child, I can understand the fear and uncertainty involved. Not knowing leaves one feeling vulnerable. We want to be able to keep things in control, and when something like this happens, there is often nothing we can do other than mitigate the fallout and do our best to understand. When we are in that moment, when our fears are intensified, the lure of easy answers looms large. Something that lets us feel that we are again in control, that we know the answer, even if that something is false, is very appealing, and once we latch on, we gather those bits that support it, that add to that feeling of control, and ignore anything that disabuses us of our false sense of security.

Going through that, yet avoiding the siren call of false empowerment and pat reassurances, is difficult. My sincere thanks to my reader for sharing her story and for showing that, while bad things can happen, it doesn’t mean that vaccines are irredeemably bad or that you should eschew immunization. Rather, it calls for a rational, reasoned response. When the time comes for the next shot, they will discuss it with their doctor and try to figure out the best course of action based on what is known, and that may lead to actually opting for the shot. There are parents out there who have been through the rare adverse event following a vaccination, yet who still support vaccines as the public health boon that they are. They realize that, while there is still more to learn and always room to improve, the risks presented by vaccines are far outweighed by the risks from the diseases they prevent.

15 comments:

  1. Very compelling. Thank you for sharing.

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  2. My son started having rather violent myoclonic jerks in his limbs, starting a few hours after his 4-year vaccinations. There was no loss of consciousness, but his arms and legs were thrashing about uncontrollably. The pediatrician's office was closed, so the pediatrician on call at that practice suggested we take him to the emergency room. We did that, and he did some more twitching for the triage nurse before a doctor could see him. By the time we got to a doctor, it had passed. He had a follow-up with a pediatric neurologist the next day, and no irregularities were found. He's been fine ever since. It hasn't affected our desire to have our kids vaccinated.

    There's one common factor worth noting: my wife is a PhD chemist.

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  3. @mtgordon

    Thank you for sharing. If I might ask, what are your reasons for remaining supportive of vaccines?

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  4. The "seizure" occured immediately after the nurse turned around. Vaccines are not given directly into the vein and so it is unlikely the medication had yet entered the bloodstream to cause a reaction so quickly. More likely it was a vasovagal response. Vasovagal syncope (fainting) can occur immediately after getting a vaccination. It's not uncommon.

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  5. Here is a link from the CDC on syncope after injection. The biggest harm in syncope is a person hitting their head or other injury.

    http://www.cdc.gov/vaccinesafety/Concerns/syncope_faqs.html

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  6. Thanks for this balanced post.

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  7. I can understand the outrage when a parent does not know what caused what ever reaction their child may have had. However, it would be best for everyone involved in various vaccine controversies to not lash-out with either verbal or intellectual aggression towards: either their perceived human agents of causation, people that disagree with them for whatever reason, or innocent by-standers as in "displaced aggression" situations.

    This results in long-term misunderstandings both ways all too frequently. But, we are only human, right? Maybe this is why so many people extol the attributed quote from Jesus to "love your enemies". That certainly is a useful perspective on this.

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  8. As a child, I had a horrible reaction to the old DTP vaccine that still used live pertussis in the vaccine. I don't know exactly what happened, but I know that I never had another of those shots. When my daughter was born and I was told that she needed the DTaP vaccine, I mentioned my bad reaction to the DTP. Her doctor assured me that the vaccine was different from what I had received as a child. We agreed to attempt vaccinating her fully. She had absolutely no negative reaction, and has since been fully vaccinated. I have had 3 DTaP shots myself in the last 20 years or so, and while I do have a very painful reaction and a few days of flu-like symptoms and joint pain, I still feel it is worth getting the shot every 10 years if I can keep myself from becoming seriously ill.

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  9. We are out here. Parents of children who suffered a reaction, yet still support vaccination- that is. Some of us even have kids on the spectrum!

    My daughter has Common Variable Immunodeficiency. Her immune system cannot produce adequate antibodies. She now receives antibody replacement, IVIG, every four weeks to protect her from viruses and infections. The CVID wasn't yet diagnosed when she received the MMR and Varicella vaccines. 20 days later, she had a bulls eye rash, high fever, seizures, followed by regression (I think it was the chicken pox, personally). She also would regress when she had other febrile events, including after mono and rotovirus. Since she began IVIG 28 months ago, she has not suffered a single febrile event.

    She also has a permanent medical exemption to all further vaccination. She hasn't been able to receive a vaccine since she was 20 months old.

    CVID is listed as a contraindicated condition to both the MMR and Varicella vaccines.

    While I understand my daughter had a reaction due to her rare condition, I honestly don't agree with today's vaccination schedule. Until we can improve upon identifying children with contraindicated conditions, I don't think we should be adding more vaccines. 4 live viruses at once is too risky in my opinion. I often tell parents to read the package insert for each vaccine before their child receives it, and to consult an immunologist if the child has signs of, or if there is a family history of Primary Immunodeficiency. http://info4pi.org/

    However, you won't catch me blathering on about toxins, or aborted fetuses. I cringe whenever I hear antivax propaganda. My daughter had a reaction because she couldn't create antibodies, and the virus over-replicated. A wild case of measles or varicella can cause further regression, if not kill her.

    I would like to punch the next person squarely in the nose that says "MY unvaccinated child is not a risk to your vaccinated child". Yes, they are very much a risk.

    Vaccines work, herd immunity works, and some of us MUST depend on others to maintain a high level of vaccination in order to survive.

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  10. Thanks to the parents who have commented and shared similar stories. I feel that these kinds of stories are very important for people to hear.

    @Monica Bice

    I was unfamiliar with CVID, so I took a bit of a look around, finding that it affects about 1 in 30,000, based on estimates over the past couple decades, with an onset generally after 24 months of age. On a casual look, I was unable to find indications on the sensitivity and specificity of screening tests.

    Perhaps my friend Ren could shed a little more light on this, but checking for CVID before administration of live virus vaccines would depend on the reliability of such tests. The more reliable (and cost-effective), the more strongly I would recommend doing such testing. However, the less reliable the tests (e.g., increased false-positives or too many false negatives), the less valuable such testing would be.

    All that said, your story clearly illustrates when vaccination should not be done and why it is so important for other people who can be immunized to do so.

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  11. Todd, checking for CVID before vaccination is difficult. The diagnosis is heavily based on response to components of the DTaP and Pneumococcal vaccines. Granted, testing for the titers to these vaccines could indicate who should have live virus vaccines delayed, or be exempt, but that would be extremely costly.

    CVID also known as Hypogammaglobulinemia is a form of PI- Primary Immunodeficiency, a genetic condition. While CVID is rare, about 1:500 individuals have a form of PI. There are over 150 various forms of PI, 15 states in the US now test infants for the most severe form of PI- SCID- severe combined immunodeficiency.

    In a perfect world, all infants will have a vaccination schedule tailored to their specific health needs.

    Testing for SCID at birth is a huge step in the right direction. We also need a greater awareness of PI. There were enough flags in my family that we should have consulted an immunologist prior to vaccinating.

    Here are the 10 warning signs of PI-
    http://www.info4pi.org/aboutPI/index.cfm?section=aboutPI&content=warningsignsadult&CFID=40408608&CFTOKEN=20233531

    Here's some info about clinical testing for PI- http://www.info4pi.org/aboutPI/index.cfm?section=aboutPI&content=algorithm&CFID=40408608&CFTOKEN=20233531

    Not only should those who can be vaccinated do so, but you should also consider donating plasma. Plasma is used to create IVIG (intravenous immunoglobin) the treatment for many Primary Immunodeficiencies. Your high antibody levels to VPDs ensures protection for those receiving IVIG who can't create antibodies to VPDs. Plus, you get paid ;o)
    http://www.donatingplasma.org/

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  12. This is why comments on blogs are so great. Thank you, Monica, for all the added information! It's so good to learn new things.

    Sounds like knowledge about primary immunodeficiencies can help to create better, more effective and safer vaccines. Another area of research that people can support!

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  13. Threat is 20,000 times 'louder' than opportunity (and not without good reason!). This is why we hear the bad news and not the good.

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  14. Thank You for sharing this. I have multiple autistic children and grandchildren so in our family it is a genetic thing and we know it. we accept it and keep on going. My problem with the anti-vaccine group is that they are determined that we do not exist. To them ALL autism is caused by vaccine reaction and my baby daughter (now 8 years old) that was diagnosed before she ever received a vaccine scares them to death.

    We do need more research into possible interactions in some children and I think every child that has a reaction should have DNA taken from them to see if there is a pattern that is identifiable in these kids to avoid giving them things they might react to in some way.

    A cheek swab by the kids that do react could very well provide the answers needed to screen kids and find alternatives a well as finding what they actually are reacting to. Is it the combinations, a single vaccine, a preservative, what is actually causing the problem in the kids that react.

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  15. I am 26 years old and apparently had a bad reaction to a vaccination as a small child. The details I can tell offhand are few, and I need to speak to my mother about it for clarification.

    What I recall is that the reaction troubled my paediatrician (who gave the shot) enough that she would not give me the required boosters later on. (It was a vaccine which was given in several doses over a few months or years, as I understand it?) I think it was DPT?
    This came up at a visit with my current doctor some years ago. She told me to hold off on getting a tetanus booster, I think it was, after hearing about it? Since my teen years I've had strange illnesses/symptoms which are now supposedly diagnosed. (Included are autoimmune, dysautonomia, and a few mitochondrial disorders.) Given that, I can easily suppose that something about my body couldn't handle that vaccine well, but I was given all the other recommended ones on schedule.

    I am not very supportive of exemptions. There was a time I heard about anti-vax concerns and wasn't dismissive, but I read a little more and am rather upset at how many parents have been able to opt out.
    Some Amish families in my area do not vaccinate, and this year quite a few children had the whooping cough.

    This is such an unhelpful comment, I apologise, but I wanted to share what I could.

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