What might be wrong with my daughter...

[Zen]

As most of you know, my daughter has been fighting multiple health issues over the past year or so that began, from our perspective, last June when she passed out in our kitchen. Shortly after that, after a few blood tests and a couple of different doctors, we discovered that she was suffering from Hashimoto's Thyroid disease and her thyroid had pretty much ceased to function. Unfortunately, as the year went on, despite having her thyroid levels under control with medication, she continued to suffer from symptoms including frequent light-headedness and dizzy spells, nausea, migraine headaches, fatigue, and muscle weakness. Over the summer we have had her see several other doctors and she has been diagnosed POTS (Postural Orthostatic Tachycardia Syndrome), which is an auto-immune related syndrome that pretty much is summed up by the list of symptoms I listed above.

The other thing that we found out is that there might have been something that triggered all of this that MIGHT have been avoidable: her Gardasil vaccine. She received her vaccine two months before her thyroid failed. One of my wife's coworkers has a daughter who also developed similar symptoms after receiving the vaccine. And in Denmark they have banned the vaccine and had found that approximately 1 in 500 young women developed autoimmune diseases after receiving the vaccine.

That isn't saying that the vaccine CAUSED the disease. Autoimmune disease is like a loaded gun. You are born with a genetic predisposition for it. But not everyone born with the predisposition has the disease triggered in their lifetime. From the research being done in Denmark, it seems that this vaccine is a fairly reliable trigger. There is no doubt that our daughter had the genetic predisposition. My aunt had autoimmune disease. I have Fibromyalgia, which is highly correlated with many autoimmune diseases and, I would be willing to bet, will eventually be discovered to be an autoimmune disease itself eventually. So, yes, the gun was loaded and there is no guarantee that she wouldn't have had something like this happen eventually and that it might not have happened at a much worse time when she didn't have as much insurance coverage or as good of a support network, like when she was fresh out of college living on her own in a strange city or something like that... But that doesn't mean that I wanted my little girl to suffer the way she has.

Of course, we have no proof of this, only speculation based on the evidence of other people and the circumstances of the timing of her disease. But I would strongly advise any of you with children of the appropriate age that are encouraged to get this vaccine to consider it carefully and look up the research. I will post some links sometime soon.

[Tahlvin]

So sorry your daughter is having to go through this.

[Elle]

Zen, that's awful! I hope now that you have some answers your daughter's health will improve.

[Kyle]

That's terrible, Zen. The research I've done on Gardasil (which I've had administered for two of my daughters) does not indicate any causation between auto-immune disorders and the vaccine-- and the science I read speculates that the correlation is because so very many girls are getting the vaccine that there's going to be a significant number of people developing auto-immune disorders-- which they would have developed whether given the vaccine or not.

And I don't say that lightly. As the father of a son who developed autism symptoms (and has since been diagnosed as such) shortly after getting vaccines, I did a lot of research on this. I also know how compelling the correlation between the two seems to indicate causation.

But here's what I'm saying- you did the responsible thing and protected your daughter against HPV so that we can try to eradicate diseases like cervical cancer. What she's going through now is just awful, and as a parent you want to examine what y'all could have done that could have prevented this. But you need to know that the overwhelmingly likely answer to that is-- nothing. There's nothing you could have done to prevent this. But now you can just love your daughter and do everything you can to help her manage her condition-- which, of course, I know you will.

[Zen]

Here are some links. This one is about the documentary that was done on Danish TV that lead to the estimate of 1 in 500 girls having adverse side effects from the vaccine:



is a summary of a couple of articles from peer reviewed journals about girls who developed POTS after receiving the vaccine. It seems to be one of the more common side effects.

My wife is a neonatal nurse and we have ALWAYS been advocates of vaccinations. We do NOT take this lightly at ALL! Believe me!

If your family had no prior history of autoimmune disease, I wouldn't be as concerned about the vaccine. But if there is a family history, I would advise you to look over the information and ask a lot of questions prior to agreeing to administer the vaccine.

[Kyle]

Ah man- I'm not trying to argue with you, Zen- but here's the deal- I've been there personally and done this same research. And the thing is this- the research that says it indicates causation is just anecdotal. The two studies you link two describe seven cases.

But here's the thing for me- it seems like you're beating yourself up over this- like you were somehow responsible for what happened to your daughter. But you're not. The science doesn't show a link. But even if it did- you're not to blame. It's natural to protect your kids and blame yourself- but you didn't do anything wrong.

I'm so, so sorry for your daughter and your family. It's a terrible situation, but it's one that y'all will overcome by supporting and loving each other.

[Zen]

I know that we didn't do anything wrong. (My wife's reaction was a bit more of what you are describing.) The fact that the doctors in Denmark have stopped administering the vaccine due to the the number of cases of potential adverse reactions, however, suggests that there could be a problem with the vaccine. I also am well aware that there is no way that the drug company will ever be held liable for something like this because of the very nature of autoimmune disease. What I am trying to do is raise awareness, and I'm using you guys as practice before I put information on larger forums.

One of the first devil's advocate approaches I used with my wife was that the fact that people are genetically predisposed to autoimmune disease means that there is no way of knowing what actually triggered the onset of the disease. You could make a valid argument that, during the same time period, my daughter was applying for the most competitive and highly regarded high school for mathematics and science in the state of Illinois and that the stress of that process could have been the trigger that started the autoimmune cascade. In the year prior to her thyroid condition becoming known to us, she also came out as bisexual to us and her entire school, including helping to found a chapter of GSA at her middle school. Not to mention the fact that she is going through puberty, which naturally puts the body through lots of stress. So, yes, there are plenty of alternative explanations which could be offered.

And the sad truth is that, as they say, the barn door is already open. The best we can do is try to find the best treatments we can. At least, after a year of searching, we finally have the diagnosis of POTS! For most of last year we put up with her endocrinologist telling us that her thyroid levels were fine so she shouldn't be having the symptoms she was reporting and that was that! She basically had to put up with what fibromyalgia patients have been dealing with for years: "It's all in your head." Now we have something to work with. She and her mom are visiting her grandparents this weekend and on the way out of town they stopped by to see a chiropractor who was suggested by one of my wife's coworkers whose daughter has had POTS for several years. When I texted with her yesterday, she said she felt better than she had in a long time. That was really great news! (Made me wonder if I should give the guy a try? But I worry about mixing chiropractors with lumbar arthritis... the fibromialgia is one thing, but the back arthritis is another altogether...)

[Kyle]

[Zen]

[Ronster]

Thanks for sharing this Zen. It will be something that I think long and hard about.

Prayers for you and your family.

[Zen]

[Kyle]

[Zen]

OK, let's just go with the admitted common side-effects that are common enough that they have to put them in the patient information and not just in the information they give to the doctors, which includes the potential long term dizziness, nausea, and headaches. I find it very interesting that the prescribing information has no data on long term studies that go beyond 15 days, yet the patient information says to contact your doctor even if the symptoms occur several months after the vaccine.

I understand the arguments that you are making Kyle and I get that it saves lives and protects against cervical, vaginal, vulvar, and anal cancer. (Not ovarian, BTW) HPV causes about 5% of all cancer worldwide. In the US it accounts for about 3% of all cancer in women and 2% of all cancer in men. There are 12,990 new cases of Cervical cancer expected in 2016 and 4,120 deaths. The survival rate for cervical cancer has improved by over 50% in the past 40 years.

Even if only 0.1% of the children who get the vaccine have long term problems with dizziness, nausea, and headaches, it would still be around 9,000 children per year. My daughter has managed to maintain her grades, but she IS exceptional, and I am not exaggerating. The nurse and counselor at her school have been pretty much amazed at how well she has coped with the severity of her symptoms. Yes, we have no proof that her illness is a direct result of the vaccine, but it is a possibility that the vaccine manufacturer admits and if we hadn't been as proactive as we have been, I can't imagine how she would have coped with another year with the same level of symptoms.

[Elle]

Ok, question, don't they have to have a series of the vaccinations that are spaced out a long time apart from one another? So I am wondering how researchers link various reactions to the vaccination, given that they'd have to have so much data about such a long time frame. Wouldn't you have to track rates of all these complications in the non-vaccinated population, at least up to this point, and then search for significant differences in the vaccinated population? But how do they pinpoint this? I don't know - I have no dog in this but am curious. Is this the type of medical research I keep hearing about "big data" as a tool for solving?

Well, I do have a dog in it because I have one kid in mid-course of vaccination and another who might receive it later. But my reasoning has been that we always want to vaccinate when we can, but the safety of ANY drug is likely to be affected by the big, beautiful Profit Motive to some extent, not to mention the We Don't Know Everything factor, so we always have to remain open to the possibility of problems with drugs or vaccines. We want to detect those things and fix them, so ultimately that should be a pro-research, pro-science approach. I get suspicious of the anti-vaccine movements when they go way down the "all chemicals bad" and "science inherently suspect" road, because I cannot travel those roads at all. [And I am enraged at the dipshits who directly endanger babies lives by not vaccinating for things like pertussis, meaning we have outbreaks of it all the time now.] But raising the questions and trying to figure out if there are connections? No problem, we should be trying to do that all the time, right? And drug companies answer to shareholders; they're not simply in the business of making only the safest possible product regardless of how long it takes to get to market or how much they profit. Sometimes that's not a bad thing, as when people with an incurable illness are desperate to try something, try anything, even if we're not sure yet how it will go.

[Kyle]

I'll read through this later- sorry about the "ovarian cancer" mistake- I got my wires crossed as I was looking up stats- wasn't trying to pull one over on you.

[Zen]

And speaking of science, let's talk about the science in those clinical trials. First of all, there is only one of them that is a controlled trial, where there is a group that is NOT given the drug to compare against, and in that case, the data is highly compromised because the subject pool was women who were receiving their 2nd injection and some of the women from the pool had been removed because of ... you guessed it, adverse reactions. So, if you remove the people who had adverse reactions from your subject pool and then test the subjects against a control group that seems like you're stacking the deck, doesn't it? It is at least bad science. I know if I did the equivalent when I was in grad school my Advisor would have had my head on a platter before he let me write up the data to present it. Still, the study found a significant increase in adverse reactions in the trial group.

Next, let's talk about the number of subjects. The total number of test subjects was a little over 15,500 in all of the studies. The drug is primarily administered to 11 and 12 year-old girls the way it is currently used. (Though they would prefer that you also get your boys vaccinated as well. We did have our son get the vaccine... After all, that is how the vast majority of women would get HPV in the first place: from a man! Though my daughter is one that is equally likely to get it from a woman... ) The number of clinical trial subjects who were girls in the target age range? Less than 3,500. The majority of the clinical trial subjects were women between the ages of 16 and 26. For several of the studies, the data is based on as few as 300 subjects. The numbers just seem too low for a drug that has warnings that it might cause seizures so you might want to have the patient lay down for 15 minutes after the injection... (They say syncope, but let's call it what it really is, folks.)

[Elle]

You know, when you mention this I realized that they had my daughter wait in the office for about 10-15 minutes after giving her the shot. I thought nothing of it at the time but presumably that's part of the protocol. She has to go in for another one in a few months so I will ask them about it. Our doctor is always full of good info. It's a problem because they moved offices to a super inconvenient place and I don't want to give them up but... argh, the annoying drive! Anyway, I had questions about the Chicken Pox vaccine back when that started and they told me all kinds of things I never would have thought to investigate and wouldn't have found easily by googling in the darkness of ignorance.

[Zen]

My daughter was one of the rare few who got chicken pox from the vaccine... (though they told us she couldn't pass it on to others. Remember that visit Stan? LOL! Talk about how to scare your friends! Hey, we're stopping in with our child who all of sudden has chicken pox!) she has always had adverse reactions to things like that... sigh...

I just read a wonderful article that suggested that the problems in Denmark are "Psychogenic" in nature. Basically saying that it is all in their heads, exactly what every person who is sick wants to be told. If you go to websites about POTS, you will find that the vast majority of POTS suffers spend a long time being told there is nothing wrong with them before getting a diagnosis.

Is it possible that the reason they aren't recognizing this as a side-effect of the vaccination is because they don't recognize that it exists?

[Kyle]

You can only fight one fight at a time. I can't argue with you about whether or not it exists because I believe it exists. The question is whether there's evidence it causes the conditions. What you're doing is attacking tests and saying "These don't prove it DOESNT cause it". But that's not how science works.

Here's what we know- it prevents HPV. Thus it has a great value. Now to say we should not utilize that value, you have to show evidence that it causes adverse reactions that outweigh the value. Do you have actual science that shows that- not just anecdotal evidence?

[Zen]

But they have absolutely NO scientific evidence about the long term side-effects of the vaccine. There have been no studies that have looked at the impact of the vaccine beyond 15 days.

One article that my wife (who is a nurse and has a bachelors decree in biology) found suggested particular genetic markers found by the human genome project that predispose individuals to autoimmune disease that can be tested for that might interact with vaccines like gardasil. (Unfortunately my computer is not connecting to dropbox correctly or I would have a link to a PDF of it... or be able to provide a link.) She is thinking of having our daughter (and me, since I have so many similar health problems to the ones she has) tested for it...

If there were a reliable genetic marker that indicated individuals who would be likely to have an adverse reaction, that seems like it would be scientific enough.

You also need to realize that I have been dealing with a disease for the past 30 years of my life that many doctors don't believe exists and no doctors know what causes or how to cure. Many of them think I'm crazy. That the pain is all in my head. I have a hard time believing that the medical establishment is actually competent in dealing with situations that are outside of their expectations. If it isn't what they want to find, it is an error in measurement or a "psychogenic" effect. It couldn't be that there is something wrong with the product...