Tuesday, August 25, 2009

On my mind

After Cason had his 'adverse event' (that's what the government calls it anyway) I ramped up my research on vaccines, vaccine safety and vaccine necessity. Let me preface this by saying I am not one of those tree hugging, government hating, yahoo's, who thinks all vaccines are the devil and that the medical advances like say, hospital births or vitamins are taking away my civil liberty.
BUT, I do have and have always had, a certain amount of suspect when it comes to the recent onslaught of drugs that have been rapidly approved for general use well before any significant safety testing is done on them. Long before Cason was born I was suspicious of drug companies and their cozy relationship with the FDA and the fat cats over there in that hub of politics known as DC. Way back in the last century in fact, I refused the live polio vaccine for my oldest (they were still giving it back then) and insisted he get all 4 shots in the inactive form. My doctor at the time wholly supported my choice and respected my research. Lo and behold, not too long after that the government 'decided' that indeed, shooting live polio into 2 and 4 month old babies wasn't good for them after all and the protocol was changed to the one I had insisted on for my son.
Flash forward to Cason and his shots. I still declined several of the shots 'recommended' for babies, even before his 'adverse event'. He hasn't had Hep B, (because he isn't an iv drug user, he isn't sexually active and I am negative for it myself which accounts for something like 99.9% of transmission of that disease), he didn't get the new version of the rotavirus(the last one was pulled after inadequate testing resulted in the discovery of intesussception or collapsing intestines as a fairly common side effect of that shot in the general population of kids) and I had a whole schedule worked out for how the remaining shots were going to be given but obviously that's changed now. My concern then was (1) this trend of over vaccinating and (2) the sheer speed at which these vaccines are pushed onto the market where the real 'testing' that goes on is on the general public (see the rota virus above for example) and then the drugs are pulled after the bad shit has happened to many, many kids or adults depending on the drug and on how quickly, cough, cough, the government and the drug companies move to pull a drug off the shelf. My general rule of thumb is that if a drug hasn't been on the open market for at least 5 years, without reported or questioned negative side effects, we don't take it. Which is why Cason only got the shots he got. All had been on the market for decades and had proved to be 'safe' but did have some RARE known side effects which to be perfectly honest I just assumed wouldn't happen to us. I was wrong. Almost deadly wrong.
While we still don't know what happened to Cason or why it happened and may never know depending on what we decide to do as far as testing on him to look for an allergy, at this point he is no longer a candidate for any vaccines. This does not make me happy. I don't want him to get mumps or rubella or whooping cough and die from a disease that was/is preventable. It's not a good place to be this fence I am walking on, believe me.
Sadly, my research has led me to another family who lost their beautiful 4 month old son just hours after he received his vaccines. The same ones Cason got. I can not tell you how many tears I have cried for that family. I have corresponded with the mom who has been kind enough to share the intimate details of the last hours of her son's life with me and my heart literally shattered reading her words. She and her husband did everything right for their child, they were there with him the whole time and the doctors could not save him. It has been decided by the government that indeed the vaccines did kill him. They will be compensated for the loss of their son, but really what $ amount can ever make it right or make them whole? There isn't any amount on earth that can fix them or bring back their healthy, beautiful boy. They have been told not to vaccinate any future children they might have or to at least wait until the child(ren) are 5 years of age. But fate, that bitch, has not let them get pregnant again since losing their son. It is just wrong, so wrong.
My quest has new meaning, my research, new drive. The only difference is that now you may hear about it here. I think we all need to be informed and to have all the facts before us when we make decisions that can literally have life or death consequences for ourselves and for our children. I am not planning on getting on my soapbox for too long but I do plan on sharing information that I think is relevant and worth hearing about.
And I welcome your feedback, no matter where you are on the issue. Just be polite and be informed, that's all I ask.
With the Swine Flu, shudder, shudder, coming our way, I especially want to make the point that the government is fast tracking UNTESTED vaccines for mass vaccinations of children this fall. Oddly, if you do the research the Swine Flu is no more dangerous than other types of flu, my oldest had it this summer, eek!, and yet the media would have you believe it was the second coming of Christ or the plague or some other terror, born out of a pharmaceutical companies profit ridden dreams.
Here's a link http://vaccineawakening.blogspot.com/2009/08/gardasil-swine-flu-vaccines.html
with some interesting information on that topic and on the whole Gard.asil debate, which btw, my daughter will never have.
What's on your mind?


Hope's Mama said...

Thank you so much for this post. Not relevant to me just yet (although here they are trying to push the Swine Flu vaccine - untested - on to pregnant women so ahhh, no thanks) but I will come back to this in a few months time. Keep at this girl, I admire your grit and determination. And like yours, my heart is breaking for that poor, poor family you mentioned. Just cruel beyond words.

Reba said...

i thought of cason the day naomi had her 4-month vaccines last week. a tiny hive appeared on the bridge of her nose about 3 minutes after the vaccines were administered. i was terrified! but it went away even quicker than it appeared.

i also realized, i don't even know what vaccines she has had! that realization doesn't feel good. i really should know! i don't even think her little blue book is correct.

Rivalen said...

"adverse event", "fetal demise" It's so nice how the government dehumanizes life's tragedies for the sake of filing papers and avoiding emotional decisions.

Full-on "hippy" might not be the way to go, but it doesn't mean we shouldn't be informed. Rock on.

Sophie said...

With Sally on this one. They are gonna tell us to take this vaccine in two weeks time... And I'm not doing it unless they can prove it wont hurt my baby.

Just a terrible way to lose your child. Awful.

Julia said...

Ummmm... it says my comment is too long. Will have to break in two.

So, first of all, I just want to say again how glad I am that Cason is ok. And how sorry I am for the family whose son didn't make it.

I know this comes from a very good place, and from a lot of thought. And yet I have to say that I tend to disagree with a bunch of your conclusions, namely on H1N1, HPV, and on the process of drugs/vaccines coming to market in general. I am going to talk about why below. But first, I find myself needing to say that it doesn't help that the woman you link to talks about vaccine-induced autism. This particular belief isn't just not supported by any studies, but has recently been disclosed to have started as fabricated research. (Which is a whole other topic, but I have serious anger for the person who did that-- it took years of time and millions of dollars from what could've been productive research into actual causes of autism. This is worse than lying or stealing. Because what he stole, in reality, is time. And as we know only too well, that's one thing no-one ever gets back.) So that makes it hard to see her as a credible source.

I agree that current H1N1 is not particularly scary. The Cub had it this summer too. None of us got it, btw. I think CDC could make a better/louder point about that. But I think they are afraid to have people assume it will remain so. Which, the point is, it absolutely doesn't have to. There is a hypothesis that the terrible flu of 1918 first came through the spring before, as a mild thing, much like this one (and that cities where it did less damage later are the ones where it was abundant that spring). But that it then acquired the mutations that made it deadly. The concern now is not that the current version is going to show up in schools in the fall. It's that an updated version will. All of this still doesn't necessarily make me a yes, absolutely, vaccinate everyone now proponent for H1N1. But it makes me a realist who says, yes, we need to spend the money now to make the vaccine. If the evidence of the newly deadly strain emerges, we will have to start vaccinating, and fast.

Julia said...

[And part 2:]

In general with vaccines or drugs, there is a schedule of human trials which are very carefully prescribed in terms of safety and ethics procedures. But even when you get to the last stage of application trials (the stages you do to file an application with the FDA), there is a problem of statistical power. You need to design your trials to have statistical power to detect adverse events of a given frequency. And companies/doctors do that (they also have to do that without cutting corners because the big kahuna journals like the NEJM won't publish research that doesn't meet these standards). But when it comes to events of even lower frequency, these trials simply can't detect them. Nor is it even possible to design anything that can still be called a trial that would detect those events. This is because of how mathematics work out. So yes, things do essentially end up being tested in the general population, but this is unavoidable and is only true for events that are very very rare indeed. In that sense, we do need more money for the FDA to conduct serious post-market follow-up and to yank things faster if needed. And there needs to be strong monitoring for adherence to adverse events reporting. But that doesn't mean that people are being dishonest en mass in bringing things to the market, or that pre-application trials are insufficient as they stand.

Finally, I also come out on the other side of the Gard.asil issue. All vaccines are in a sense insurance policies against the disease coming through our necks of the woods, close enough to us to be relevant, being virulent enough to infect, and dangerous enough to cause serious injury or death. HPV is pervasive. It is very virulent. And the strains that cause cancer are very dangerous. Not only can HPV cause cervical, uterine, oral, anal, and penile cancer, but it is now being implicated in a lot of head and neck cancers too. Of course there are risks. And if Merck is underreporting adverse events, they should be fined and better reporting needs to happen. But even allowing for all the adverse effects delineated at the link you provided (by the woman I can't really trust), I come out on the side of HPV is still more dangerous than the vaccine. By which I mean statistically more likely to cause a bad outcome than the vaccine. So yes, my daughter will be getting it.

Sorry for the novel. I hope it comes through that it's written in the spirit of respectful disagreement. And again, I am so very glad that Cason is ok.

[and I can't believe I wrote a comment that broke the comment box... so glad it didn't just eat it.]

Miryam (mama o' the matrices) said...

oh, this is so hard. And there's so much fear and pain that rides on this issue, that I can barely sort my way through to a proper response.

How drugs get tested is a very sore topic around my house, given a certain extremely expensive clotting med (which we don't use), which did not get tested sufficiently, and did not work as well as other drugs on the market. The stages of drug testing & approval is supposed to avoid that, but it's a far from perfect system.

There's a review of the four stages of testing for a drug here: http://www.newenglandhemophilia.org/newsletters/Newsletter_Spring_2009.pdf (page 8) My apologies for being too asleep to write it out myself tonight.

vaccines? They've been linked to the rise in allergies (but what hasn't), and some have been pointed to as dangerous for kids with allergies. Dangerous to vax? Dangerous not to? Both?

The horns of the moral dilemma aside (assuming I can actually unhook myself from them), I think one of the hardest things about vaccinations is figuring out who is scaring me, and who is trying to scare me. I want to understand. But I have a very hard time figuring out who I can learn from. Adverse vax events are underreported, I'm told by our allergist, and that can only complicate matters. Fewer cases to study, meaning we lay more significance on those cases that do get studied - but which may not be representative enough to give us a good, clear picture of what a vaccine's risks can be. And wastes what could be learned from a family's day of fear, or sorrow.

Good luck in your research. I'll be reading!

k@lakly said...

I love that your comment took up so much space and that you put so much thought into it. I knew, or at least suspected, becasue of our history, that you would be the one to call me to the table, so to speak, on this issue.
I don't know all of the answers or even prestend to, but I do have information and sources beyond the ones cited that guide my choices, especiallly with re the garda.sil. vaccine.


This link discusses more of the reports on the vaccine and it's reported effects on girls. I don't have issues with the woman I cited earlier as most of what she reports is cited and validated by other sources. The whole vaccine/autism debate still lingers and while the notion that time was stolen away from research is a good one, I believe that the efforts of the parents who led this crusade led to safer vaccines today, less mercury, less thimerisol and more awareness of the things we are injecting into our children and ourselves. These are not bad things. I am not content to believe the government or the drug companies for that matter, always have my best interests at heart. I believe, too often, they are guided by the almighty $$ and that decisions are made by folks who are too easily influenced by the same. And that these decisions are made not by good hearted, well intentioned researchers, but by politicians. And that scares the shit out of me.

k@lakly said...

My part 2:)
I want good research to be done. I want good reporting to be done. (adverse that is) . It's not. Even my ped had to seek out the proper way to report what happened to Cason. The drug companies and the government do not make it easy for the docs to do it. Which says to me that they are not all that interested in facilitating the process.
The HPV virus that can be so deadly is not even closely addressed by the vaccine. I have a very good friend who just finished her chemo and full hysterectomy which resulted from cervical cancer. The exact cancer the 'vaccine' is supposed to treat. Her oncologist, a well respected specialist in the field, has a HUGE issue with it and its media attention. In a nutshell, the vaccine addresses a small % of the known agents that cause the cancer but leaves the rest untouched. The very best, gold standard, medical treatment for the prevention of this cancer, that is SIDE EFECT FREE, is early screening.

a year ago:

this month:

If we could find a magic bullet that fixed all the bad things in our lives, I would sign on, no doubt. But, these days, it feels a whole lot more like a bunch of carpet baggers, selling me 'cure alls' while reaching into my back pocket.

k@lakly said...

Yes, good doctors are doing good things and good research is being done and YES, YES, YES, vaccines have done amazing things in our lives. They have cured us from deadly diseases. They have stopped hell in its tracks. I want more good things to come from these medical interventions. I believe they can cure and prevent horror from inviting itself into our lives.
I just do not believe that everything that needs to be done to make thses interventions safe is always being done. Especially not now, not in the time of lobbyists and pharmaceutical reps, who make me shiver in my boots everytime I see them, (which is EVERY TIME I AM AT THE DRS), so while there is a safer alternative, like pap smears and hand washing...I'm gonna stick with those.
I want Cason protected from everything, especially from things I know there is medicine available to do just that. I hate that I have to rethink this issue for him. I don't know what his issue was with the shots he got, we are going with the allergy theory for now, but what if?...really what if???
Are good drugs able to do bad things and can we make them safer if we just step back and take our time. If the answer is yes, then this is me, stepping back.
And no way is my daughter getting the HPV shot. Not now.

Aunt Becky said...

I think "adverse affect" is a terrible, shitty term to make what happened sound less awful.

Shannon Ryan said...

I probably lean toward being one of those 'yahoos' hehe But, after lots and lots of reasearch after Gwen was born, I just didn't feel right giving her vaccines.. it was always our intention to wait until she was older, so if there was a reaction we would be more likely to notice, and at some point just decided that we weren't doing it. I hate how when I was a kid there were 7 vaccines, and now, dozens!? Did tons of folks start dying off to make all of these new shots needed? After Dresden died, I became a CRAP statistic.. the 1% of women whose babes die inside them.. the 1% whose babies never get to come home.. I look at statistics in a whole new way.. sure, the risk of vaccines is RARE - BUT... BUT.. when it's YOUR baby that it happens to, statistics don't mean shit!! And K@lackly.. you know that more than any of us having actually gone through being that statistic twice! I'm glad you posted this and are sharing your findings with others.

Cara said...

This is such an important topic. Before Emma died I was so, "yes doc. sure doc. whatever you say doc cause you are the one with the education, doc.

Then, I did my research. My subesquent children had choices made for them, by me, not the doctor or the FDA.

I stand by my choices even if they were not respected by the medical professionals...

CLC said...

I read as much as I can about this subject, yet I am still on the fence. Miryam said it best when she stated that she's not sure which side is scaring her. I am right there with her. I have read about Dr. Of.fit at CHOP and believe he has done wonderful things. But then on the same hand he has profited by creating a vaccine (I forget which one) for Me.r.ck. So there goes his credibility. I think he should be paid for his genius, but then at the same time, it's hard to take someone seriously when you know they are profiting personally from what they are preaching.

Basically, I have been doing the vax two at a time, and plan to continue this way. Maybe it won't make a difference in the grand scheme of things but as another commenter pointed out, once you have been that one in a thousand, you don't want to risk being that one again. Even if it is unlikely. Because we all know that lightening can and does strike twice for a few unlucky people.

Michele said...

Peter is a scientist and I have to say that has been a godsend when it comes to our research into vaccines. In addition to choose to not vaccinate against a number of vaccines, we have clear brands of the vaccines we have decided to give, based on ingredients, etc. We have used a lot of info (and it helps that P is a scientist for a major pharma company) but a book that is a good, everyday person read is "The Vaccine Book" by Dr Sears. He discusses the APA vaccine schedule, what is in them, why some people choose to vac/or not to vac against the illness, and the chances of your child getting sick/dying from both the vac and the disease.

Reese said...

As a microbiologist and someone who has spent some time in Africa holding babies dying from diseases that have a vaccine---it scares me shitless to see so much unsubstantiated data out there that is leading to a resurgence in childhood diseases that were all but gone (mumps, measles, whooping cough, diphtheria). Having learned of 2 children in Michigan that died from whopping cough because their parents were scared of the DPT--autism link (which is not the supposed link to autism-- MMR vaccine was) broke my heart.

There is absolutely nothing wrong with educating yourself about vaccines. It is important and you should have facts---BUT I would take the time to read scientific reviews along with everything else. I know that many of you are not scientists, but even reading the conclusions of what INDEPENDENT researchers have found (those who are not funded by FDA/CDC---and there are A LOT of them) is beneficial.

It also infuriates me professionally that some ASSUME that all vaccine research scientists will push something through quickly because of money. Scientists are human beings, mothers, fathers, sisters, brothers and most of us got into this particular field to help fight the good fight in infectious diseases. 10+ years of schooling (where you make little to no money) and $30K/year salary while working in academia is more data to support the not doing it for money hypothesis.

My personal take on it is that Radha will be vaccinated, and I watch her like a freakin' hawk each time and make sure that no ill-effect is seen. Of COURSE I am fearful of the 'adverse' reactions, that rare horrible thing will happen to her. Vaccines are man-made and sometimes terrible side effects can happen. But I personally had to weigh the pros and cons of not getting her vaccinated or falling into that rare statistic. Unfortunately, it seems as more and more are choosing not to vaccinate at all, we are losing that herd immunity (meaning that enough are vaccinated to protect those who are not), so in my mind, crunching the numbers, the odds are better in her favor to vaccinate than not to.

Every parent has to weigh these odds for themselves. I understand and respect that. I am just asking that as you weigh, please make sure scientific data is part of your investigation.