Tuesday, August 9, 2011

Vaccination -- or entering the fray, once again

Medieval Plague Doctor

Yesterday's health section of the the Los Angeles Times devoted much of its sparse coverage to the importance of vaccinating one's children and reported on the rising incidences of pertussis and measles. The coverage included a pompous and condescending letter from a Seattle doctor and was, as usual, completely lacking in stories of those people whose children had, in fact, been damaged by vaccines. There was the usual nod to the hysterical voices of those in the autism community but otherwise no mention was made of the risks of vaccines or even the smallest acknowledgement that scientists are constantly working on making vaccines safer (the "er" at the end of the "saf" being the crucial distinction here, if you get my drift).

I want to clarify first of all that I'm not against vaccinations. I'm not sure that the DPT vaccine that Sophie got, along with two other vaccines (for a total of five), at two months of age, were the cause of her seizures or the catalyst for some underlying disorder. I know that my own vaccination record from 1963 shows some negative reactions, and this was not discovered until about three years after Sophie's seizures began, so I chose NOT to vaccinate my sons. Was this decision an emotional one? I'm not a big one for curse words, but I'll say here that you'd better fucking believe it was a decision partly based on emotion. It was a difficult decision and one that I felt much anxiety over off and on for years, but I don't regret it. When I read articles like the ones in the newspaper today, I feel sick to my stomach. I feel sick to my stomach because I have never, not once, seen anything remotely resembling recognition of or coverage of stories like ours, written respectfully and in a balanced way. I replied to the doctor by writing this:

I'm so tired of the same sorts of letters and arguments published over and over and over, simplifying this extremely complex issue. I am the mother of a sixteen year old girl who has suffered from refractory epilepsy every single day of her life since she received her initial vaccinations at two months of age. Is her life the requisite sacrifice to ensure herd immunity? Why are voices like mine and countless others like mine not heard in this vaccination coverage? Letters like the esteemed doctors, and the rest of the coverage in this paper only serve to fan the flames of the hysterics and further de-spirit those of us who might not necessarily be anti-vaccine but who have serious, viable questions and blame for the healthcare our children have received. I have two sons who I have chosen NOT to vaccinate, the kind of children who I imagine you feel are putting others at risk every single day that they are not vaccinated. I ask you whether you might sign a paper attesting that should I vaccinate them, they will NOT begin seizing like their sister did so many years ago and NOT need to be cared for, fed, bathed, diapered and comforted for the rest of their lives. I would ask you, too, to care for them financially should they follow in the steps of their sister and perhaps figure out how to deal with their heartbroken mother.

I wonder if he'll answer me.


  1. That letter absolutely rocks. I think maybe you should consider a letter writing business to go along with your cake baking gig. You could tandem services. I for one would love a letter written to my home healthcare company regarding the $1200 bill I recently received for right angle feeding tubes. (Actually, I probably just need you to help me edit out the swear words). And then I would need a very large German Chocolate cake to nibble on while I await Apria's response.

  2. What a perfect letter! Thank you for writing it! As for an answer,,,don't hold your breath.

  3. I wouldn't expect an answer. It would mean that the medical profession would have to be introspective and open-minded and willing to question "past Wisdom." Not one their characteristics, generally; there are rare exceptions. They forget the old adage: "Physician, heal thyself!"

  4. Thoughtful, moderate, scientific discussions don't make good press. Sad but true. Hopefully your voice and experience can be added to the mix one day.

  5. That made me cry.
    The topic is such a difficult one. I've followed it since my older daughter had the high fever and "yowling like a cat" reaction to her 2nd DPT shot in 1986. She did not receive the 3rd. Her development was on the late side with every major milestone, and she suffers from ADD. My 2nd daughter got 1 DPT, had a reaction, and that was it. I, too, relied on herd immunity. Because C. now travels the world, I think she may have at some point in her adult life chosen to be vaccinated. That choice--hers--I can live with. Like you, I could not bear the thought of harm coming to my children at the hands of modern medicine and a medical establishment that did not seem to be forthcoming with all the facts.
    Motherhood sometimes seems like a series life or death choices. We have to make the ones we can live with.
    And you have an idea for a book there in your letter.
    Where are those stories?? I can't imagine a better person to gather them.

  6. it's a powerful letter, elizabeth. thank you.

  7. When the time came to vaccinate our boys, there was no question but what we would and we did. If I knew then what I know now, I would not have allowed it so casually. Our neighbor's four month old granddaughter died several days after receiving a vaccine. The pediatrician was so distraught that she gave up her practice. Needless to say, the two sisters that followed were not vaccinated. It's a tough decision and one I know you don't take lightly.


  8. I think that the medical community feels as though they have put the autism-vaccine issue to rest and, as such, they have proven their point. Unfortunately, they have not addressed all of the other questions parents have about vaccines and their safety.

    I live in the state recently published as the least-vaccinated (ironically, Washington state, where this doctor hails from) and have to say that the battle rages on in my neck of the woods. I love that you added your voice.

  9. I so admire that you responded with your letter. Thanks for putting it out there, because it definitely needs to be.

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  11. Sorry, jarring mispelling, had to edit.
    Your letter gave me goosebumps.
    I have never thought much about this issue until a colleged age student at work was basically saying what that article said. I said there must be good reasons for the case against them? She told me no, it was just whack job parents, like people who won't let their kids get medical treatment. I didn't believe her. But I didn't learn more about it to make a case. I think I will send her this link.
    Thank you.

    BTW I am reading Boy in the Moon, half way through, on your recommendation. Thinking of you a lot. Amazing book.

  12. Gotta tell you,The Medieval Plague Doctor freaks me out everytime I see him/her ...

    Your letter, as I read it, reminds me instantly why I love you so and the fact you used the "f" word in your post. Radical and necessary.

    I think I shared with you that in 1987 Jess received the DPT,at 2 months and reacted badly. Very badly. Never received another after. The other kids, minus Miss Z, have gotten most of theirs, just our decision and I judge no one who decides otherwise. Totally, absolutely, completely get it.

  13. I have been in LA all week, and have thought of you so often.

  14. Hi Elizabeth, this post verifies to me,at least, the power and control that the medical world continues to wield over us. It's the same everywhere in the western world. Now I ask, who is 'pulling their strings'? I think I know and if this control doesn't stop soon there will be lots of families suffering as does yours.
    So great that you replied to the doctor...too risky for him to reply to you I am certain. But hey, wouldn't it be wonderful if some doctor did and opened up a dialogue on this topic.

  15. E - you are not alone. We decline the pertussis vax for A because when they asked us to do it, she was still 11 and it is only recommended for 12 and up, and also because our pediatrician (Bob Sears) said it is too new for us to know about any potential negative outcomes. We had to write a letter, and then also get a letter from him, but California law is VERY clear on the rights of parents to decline, and for good reason. Good for you for challenging the ignorance.

  16. excellent letter, elizabeth. i didnt know your whole story, since i just started reading your blog, but i can do nothing but sit in awe of your courage and determination.

    my son had what was diagnosed as a febrile seizure when he was age 2 (1978), and was put on phenobarbital until age 5. after he was taken off the phenobarb, his pediatrician gave him a DPT booster shot, and the next day he seized again, and was put back on phenobarb until he was 9 years old. he's fine; but i am beyond appalled to read what you and your daughter have been through and to have further confirmation of the toxicity of the DPT vaccine.

  17. Great letter, Elizabeth. Daniel's first seizure was in 1999, two weeks after his DPT vaccines. He almost died during the hospitalization that followed. The ped completely dismissed any suggestion that the shot may have caused his already impaired neurological system to overload.

  18. as usual, your voice is eloquent.

  19. Amazing, articulate, powerful letter. I'm so glad you wrote it.
    Once I approached my pediatrician neighbor and tried to discuss the convulsions my sister experienced immediately after receiving her DPT shot and the horrific losses that followed. This middle-aged doctor with two healthy children said, more or less, a few must suffer for the many and she would not budge from that stance. So luck of the draw and too bad for Marla, too bad for us. Never so much as an apology from the medical industrial complex. How I wish I'd had your letter in my hand to give to her. Thank you for writing it.

  20. Even if you get an answer, no answer will ever be enough.

    I will never forget the way my blood turned to cottage cheese when I asked someone I trust very much in the medical community, a prominent person who is without ethical reproach, about something I heard about a generalized term that I was told was often used about some of our kids, one that both shocked and horrified me when I first heard that it might actually be one that was really used by people in the medical community behind closed doors when discussing the benefits of vaccinations overall versus the percentage of casualties that can result when some of these vaccinated 'go badly'.

    I asked this person if they ever heard any colleagues use the term 'Collateral Damage'. And I will never forget the look on this person's face, one of almost shame, when I was given a very quiet, almost inaudible 'Yes'.

    And knowing that it has been two years since Bennett's surgery and he has advanced very little, seizures or not, I have very little love for vaccinations, since his catastrophic seizures, which I believed caused way more damage than anything else, started within 12 hours of his DTaP...


  21. I admire you, you never tire of fighting.

  22. These comments are really astounding. I just can't believe how many of our little "group" -- our small community -- has so many stories. Astounding --

  23. I am not against vaccines but I do not encourage parents to get them as it is their right to refuse. Recently we went for school physicals and the baby was due for 5 different injections to satisfy the state requirements. Our new pediatrician does not believe in giving all at once..."Unless I think I may never see the child again." She does tremendous research and it seems that DTAP and Verivax should NOT be given together according to the American Academy of Pediatrics. Risk? Seizures. Yet so many doctors are giving all at once anyway.The Baby got 2 shots not 5 and a medical exemption and I have 13 months to get the rest one at a time when I feel like it. As a nurse I've seen vaccines give to sick kids and one arrested hours after and had to be trached. As a nurse who has worked in a 3rd world country,however, i also see what happens in an un-immunized population especially during times of natural crisis of which we are NOT immune in the USA. Some physicians are ridiculous in shooting kids up with no regards for the side effect of the vaccine. Especially high risk children...If immunizations were given more carefully I think parents would not be as likely to refuse some of them. Finding balance is not something we as humans are especially good at.



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