Thursday, September 25, 2014

Jumping into (again) the vaccination fray (at the edges)

Last March, I wrote a post that I titled Why I Am Not Irresponsible, A Jerk, A Moron, A Fucker, An Anti-Vaxxer Worthy of Your Contempt with an Addendum. You can read it here. Other than a post that I wrote about six years ago that I titled Big Guns (which was about some new seizure medication we were going to try, but you know all the gun nuts were googling that term), the vaccination post has received the most hits -- thousands and thousands of them. I wrote then that I wouldn't ever write about the subject again, but here I am with a bit more to discuss, prompted not only by the latest tiresome admonition from a Facebook friend and her friends to vaccinate your kids, damn it! based on a cheesy article in The Hollywood Reporter, but mainly to discuss a Medscape article that appeared in my email this morning. The title of the article is Most Vaccination-Onset Epilepsy Has Genetic, Structural Cause.  Unless you're lucky enough to have a Medscape account (reserved for those of us who hold out hope that we'll discover the reasons for why our children seize or develop any number of horrifying diseases by staying on top of things), you might not be able to read the entire article, but the gist of it is basically in the following two paragraphs:

In most children whose epilepsy started following a standard vaccination, there's a genetic or structural cause, and about a third of cases of epilepsy triggered by a vaccine are relatively benign, a new study suggests.
These results indicate that vaccination-related epilepsy doesn't necessarily have a poor prognosis, said lead author Nienke Verbeek, MD, clinical geneticist, Department of Medical Genetics, Division of Biomedical Genetics, University Medical Centre Utrecht, the Netherlands.
The findings, added Dr. Verbeek, should come as a relief to clinicians and parents and increase their confidence in vaccination.
I found the rest of the article interesting and compelling because it addresses something other than the autism/vaccination clusterfuck -- namely, that vaccinations do carry risk, particularly if a genetic/structural abnormality exists. While the article might be reassuring to some (and I believe that was its intent), I can't help but wince at phrases like relatively benign and doesn't necessarily have a poor prognosis for obvious reasons. I balked at the explanation that a child who began to seize after vaccination would have begun seizing anyway, if he has a congenital abnormality or genetic predisposition to do so. There's something casual about the language that terrifies me, perhaps triggers some deep, learned response to trauma and the disconnect I felt very early on from the people in positions of power. There is no discussion of those whose seizures are not relatively benign or those whose prognosis is necessarily poor.
In an argument I got into most recently on a friend's Facebook thread, I was accused of "seeing only what I wanted to see." This person also took offense to my admittance that I wasn't entirely trustful in Science and the Powers That Be. She said, and I quote directly, When I make medical and safety decisions for my children I ONLY want science and academia informing those decisions. Let's face it -- about then I cracked up with both laughter and residual insanity from two decades of dealing with science and academia. I think I might have flippantly told her that I envied her faith because it implied she had never had it tested. My feelings about Science with a capital S have evolved over time, and trust me when I say that it's not a great lesson to have "learned." I guess you could compare it to the statements that very old and wise people make about how the older they get, the more they realize that they don't know shit. I imagine that many of us who have struggled with the medical system and how it treats and studies chronic illness have the same reservations, and I'm not sure if that will ever change in spite of Medscape's earnest attempts to do otherwise.
When I right myself from the intial reaction after reading the Medscape article and study, though, I have some questions. One of these is: What if we had known that Sophie had a congenital abnormality or genetic condition that predisposed her to seizures, so we waited to give her vaccinations in the hope that she might get a bit more development under her proverbial belt before the odyssey of drugs and seizures that would hypothetically be her future? The earlier seizures begin, the poorer the prognosis for development -- for obvious reasons. Children who develop infantile spasms at a later age than Sophie (three months), who have already learned to walk, let's say, or even to say words, can sometimes retain those abilities, particularly when their seizures are controlled. If a three month old baby's brain was given a break from medications and seizures at such a young age, when it eventually did seize, would the parts of it unaffected by prenatal insult be in a better position to compensate for the insult? The brain is elastic, after all.
I'm getting tired here, of typing. This subject always makes me feel physically ill, to tell you the truth. I took a break to speak with a friend who is exploring the use of cannabis for her own 15 year old son who suffers from epilepsy and cardiac issues. She lives in a state where it's illegal, and she's not getting any support from her neurologist, so I'm telling her everything I know, all the anecdotal evidence I have that Sophie's seizures have dropped nearly 95% since she began taking CBD. I wonder if some professional from the land of Science is out there, taking notes.

***Just in case you get your panties into a giant wad on the top of your head or around your neck, I'm slowly vaccinating my sons. I am -- I repeat -- NOT anti-vaccination, but I am -- I repeat -- emphatically dubious that Science has all the answers.


  1. You are awesome. Keep speaking it. Incidentally, I had a horrendous reaction to a MMR vaccination as an adult. I tested negative for having had the childhood disease Rubella. Since I planned to have (more) babies, I was rushed into a room to get the protective vaccination. Why MMR and not just the Rubella vac, since I knew that I'd had the other two childhood sicknesses? Convenience I suppose. Turns out that plenty of adults, according to the CDC, have had similar reactions to that vaccine. Some of us are left with lifelong pain issues and some of us had autoimmune situations triggered. The CDC admits that. But they are so blasé. So very ho-hum.

  2. Here's the line that got me:

    "...about a third of cases of epilepsy triggered by a vaccine are relatively benign."

    Do they think those are reassuring odds? Your questions are incisive and I wonder why they didn't think such a line of inquiry was important to pursue?

    I am reading Tinker by the way. Wow.

  3. My husband had his annual physical today. Despite having questions which took time to ask and despite he and the doctor discussing hunting a bit, the entire visit took TWELVE MINUTES.
    The doctor ended up telling him, "You look like you're in great shape!"
    Why does this afford me little comfort?
    No. I do not believe in all science. Not medical science, at least. Or at least, as you put it, with a capital S.

  4. I could not agree more. When I read the article, I was shocked that the tone was so dismissive, that it was not a big deal that kids were getting seizures from vaccines because they were predisposed to it. But who is to say if and when these kids would develop seizures otherwise. My own twin sons developed their first seizures within a few days for their four month vaccines. Since that time, when we have vaccinated the kids, they have been sent into spirals with months of seizures after relatively seizure free periods. As a result the boys' neurologist has suggested we cease vaccination, which is a bitter pill for my husband to swallow as he once performed vaccinations for the Air Force. I have also seen a recent study showing that the onset of seizures for kids with Dravet (not what my kids have) is tied to vaccinations. I am just glad we opted to not give the boys a hepatitis vaccine at birth, who knows if they would even still be here. Every moment with our kids is precious, their health is a treasure we protect. It is too easy for someone to write its value off and just accuse us of being vaccine deniers. But it's not good science, it is just a bias against disabled kids. We are pro vaccine in our house, but we count on the healthy to get their vaccines because we can not. We tried.

  5. I love you and yours and you are doing what is right. Peace mary from alabama

  6. Excellent post. Agree with you 100%.

  7. great article. I, too, get physically ill when I think about vaccinations. this is because my daughter's epilepsy began after her individual Mumps vaccine (i had the MMR split up). she had her first grand mal exactly one week after that vaccine. i should say that she had global developmental delays from birth. we waited to give her the split MMR until she was 3. Would she have developed epilepsy regardless? possibly. but it sure sped everything the f*ck up. and as far as her seizures being relatively benign...the author needs to see one of her bigger seizures. i should also mention that a month later we did the measles vaccine (we didn't connect the seizure to the vaccine immediately) and she got a temp of 103 and developed measles all over her back. When ped. urged me to do rubella a month later, i left. she has since been exempt from all vaccines (what few were left).

  8. Ok. I find the way medscape "re-wrote" the original article ( was as usual a bit slapdash. Most of these so-called services that aim to put science news into lay people's language can be quite sloppy and ultimately offensive. Which is what this medscape piece sounds like to me.
    But maybe, maybe, maybe, the original research behind it will mean that vaccines with well documented risks will only be administered to infants after genetic tests. It would be the obvious next step, no? To find a way to exclude triggering episodes because maybe without the trigger, epilepsy would not be set off. That would support my faith in vaccine programs somewhat. Nothing else.

  9. Without having read the article, I must say their approach and language does sound awfully casual.

    It seems to me that a healthy degree of scepticism is always warranted -- when dealing with doctors, with the government, with any form of authority. That's the reporter in me. :)

  10. I, too, have trouble with the blind belief in what passes for "science" in this country. What I DO believe in is the principles of scientific discovery - namely the process of curiosity, exploration, information-gathering, and testing and re-testing hypotheses. I believe that we can never "Know" anything 100% and the minute a scientist says they are absolutely assured of something and have ceased to question it, that is not a scientist (or doctor) I choose to be affiliated with. Keep on spreading your truth and empowering others to think about their own choices. As I always say, the questions are so much more important than the answers.

  11. I have been visiting with you daily for the past few weeks. Sometimes reading and re-reading and thinking, she knows, she really KNOWS. My adult daughter has had seizures for the last 27 years starting with a bout of herpes encephalitis when she was 6. In that odd way mothers have for holding on to a positive, I am grateful of every day her brain had to develop before it was so rudely interrupted.
    Still looking for answers,
    laura b

  12. I am a long-term reader of your blog, but I rarely post. A few weeks ago, you mentioned that you have issues with non-profits/foundations. If you every feel like elaborating on the subject, I'd be interested in your take on the situation. I just resigned from the Board of Trustees of a local non-profit. I have some good stories. Best wishes to you and your sweet family.

    Jen in San Jose

  13. Thank you for sharing on the subject. My daughter had her first seizure at 5 months after a vaccine. I was told it was the fever that caused it and not the vaccine, however she had no fever and I distinctly remember how the paramedics found it odd that she didn't have a fever. She continued to have seizures and then later was diagnosed with Dravet Syndrome. Doctors have assured me that she would have eventually started having seizures if we hadn't vaccinated. I never found any assurance in that whatsoever. No more vaccines for us ever.

  14. The medical community doesn't have all the answers. I had cancer. I'm fine now hopefully. I asked millions of questions before, during and after treatment. We were so shocked at how many times the answer was "we don't know." I couldn't believe it. A lot of my treatment was a shot in the dark, hoping that it would work.

    I get so pissed when cannabis is dismissed by the medical community as a legitimate treatment. They gave me a lot drugs to counteract the chemo and radiation. All them made me miserable in one way or another. The only thing that allowed me to function somewhat normally was taking a few hits a day off the bong.

    I don't understand why doctors aren't beating your door down to figure out why the cannabis oil has significantly reduced Sophie's seizures. Why isn't the research community paying for that EEG? And, if they aren't going to pay for it, why not give it to her and figure out the money part later. They know where you live. They know Sophie is covered. That pisses me off too. Are they just hoping you are going to say "Oh well, no EEG"?

    I'm convinced that the vaccines along with our food, climate change and pollution is causing great harm to our kids in many different ways.

    Thank you for being so open about cannabis. I'm ashamed that I hid it when I was sick. Too afraid of judgement and that I'd be arrested.

  15. I'd like to weigh in here as a midwife. I'm asked all the time about vaccinations. Because midwives don't vaccinate, I tell parents to thoroughly educate themselves before they head off into vaccination-land. (on a personal note-I contracted whooping cough as an adult and inadvertently exposed a new baby and her toddler sister, a pregnant friend, a class full of midwifery students and a college class of about 50 before I was diagnosed. Washington State was having an outbreak and I picked up the bug somewhere.Nightmare but everyone is fine.) I agree with Sabine that we need to know if a child is vulnerable before vaccinating. I don't oppose all vaccinations. They have their uses. But I applaud parents who have healthy skepticism and approach
    this issue with great care.

    I worry about parents with little resources; because they are poor, or are immigrants without translation services in medical settings. Before I blame doctors, I blame Big Pharma and Corporate America for the sorry state of our health care services. I do believe that most doctors and clinics are doing their best and have good intentions but the CEOs have corrupted the axiom 'first, do no harm". A 10 minute visit is not adequate but that doc has to see a quota every day and doesn't have the time... It's really terrible and wrong.

    I'm lucky to live where I do with a large naturopathic community that works tirelessly to subvert the status quo. I send our families to them or to docs I know who are wise and aware. If it were only so everywhere.

    Sorry for the long post. My heart breaks for all the parents who are caring for children were damaged by vaccinations. Science is far from perfect and we most not rely on it unquestioningly. When there is a lot of money to be made from research and development-beware!



  16. So many thoughtful comments. Michael's seizures began on Day 10 of the chicken pox. I always felt it was a cause/effect thing but no doctor ever confirmed. I just feel there was some encephalopathy. Oh well--- 29 years later and maybe because he'd achieved so many milestones already--- he was nearly 5---his elastic brain could retain. They are very interesting questions you pose Elizabeth.

    Jen in San Jose asked for a post re non- profits. I second that. I just resigned from a Board I'd been part of for 15 years. Someday I may post something . Meantime would love to hear your thoughts.

  17. You bring much reason and wisdom to this discussion. Science does not know everything. Dan was told he had 5 years to live. Then 7 months. He was dead in 10 days. Even humans who are experts in their fields do not know everything.

  18. You are right to be cautious. All medicines and vaccines carry known and unknown risks.

  19. Modern medicine has advanced to the point where they can now tell us what we are dying of but cannot cure much. Cancer is the one HUGE lie that gets me the most. The CURE. What fucking cure? I work in cancer care, my patients may live for some time but it's not always good time.

    You are a wise mama (intentional use of mama, but can't use a smiley face here and use a bracket) to view modern medicine and modern science with a healthy dose of skepticism.



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