Valerie Foley

Give this to anyone who thinks I am an idiot…

In Action, Medical, Parent issues, Perceptions, Research on September 25, 2013 at 6:28 am

Before I start… two warnings.

Avert your eyes and ears if you think you can’t handle reading about vaccination.

I think we really need to grow some sophistication when it comes to this issue, so I’m going to talk about it. I’m not going to argue, so if you are up for a barney, re-post this in your own networks and enjoy.

Also, this is long. Get a drink.

Almost a week ago, someone I have a lot of time for posted this article on Facebook.

At the time, I responded with a simple message that made it clear, politely, that it did not reflect either our experience or our understanding of the ‘science’ and pretty much left it at that. The discussion went on without me. I find this is the best way to preserve my mental and heart health.

On the same day, Billy and I went to the local pharmacy to pick up his epilepsy medication (a joy for another post).

A woman about my age and clearly under the weather, sat down next to Billy. She was, to put it politely, green around the gills and was waiting for her own medication. Billy was making one of those repetitive clucking noises with his throat that I know a lot of you will be familiar with, and I asked him to stop, suspecting that a woman on the verge of hurling would not respond well to that sound. She thanked me.

Somehow, in response to something someone said about a local chickenpox outbreak, the grateful green gilled woman said, ‘Oh WHY don’t people vaccinate their children!?’

At first I smiled politely. The lapsed Catholic in me didn’t want to walk straight into her bad books. Then I thought, ‘Screw that!’ (with the non-Catholic part of me) and said, ‘We don’t vaccinate anymore, because my son here is vaccine injured.’ I expected her to nod politely (we live in a polite neighbourhood) and ignore what I said, but instead she looked me in the eye and said ‘What does that mean?’.

I’ll interject here and say, I am not making this up to make a point. There is nothing I hate more than fruity autism blogs featuring clearly confected stories designed to make a hero out of the writer and a soft point about the wonders of autism. This woman exists, and she was genuinely blown away by the fact that kids can be damaged by vaccines. Which, in turn, blew me away to a more hopeful place.

I told her Billy’s story – that he didn’t cope well with any of the vaccines in the first year of his life, that his tongue swelled and he became lethargic for days after each one, that he still blitzed the average milestones up to his first birthday, that he developed rubella from the MMR and when he recovered he was silent. Much speech and occupational therapy later, he got some (but nowhere near all) skills back. He was, by then, diagnosed with autism.

Then, at 3.5 after struggling with the varicella and meningicoccal vaccinations, Billy got sick. He was weak, he wasn’t eating, he was vomiting anything he put in his mouth. He was in hospital for two weeks, not improving much, when a nurse noticed he was retaining urine and dragging his left foot when he tried to walk.

In what seemed like the speed of light, Billy was transferred to another, bigger hospital. He was poked and prodded. He gave what seemed like too much blood from his tiny body, he had nerve conduction tests and a spinal tap, he had an MRI at midnight. By now he was paralysed from the waist down, his remaining reflexes were hard to detect, his body was weak.

He was diagnosed with Transverse Myelitis and high dose steroid infusions were started. We were told by the hospital that they suspected a delayed vaccine reaction, he was enrolled in a longitudinal study of vaccine injured children, his neurologist said ‘no more vaccinations for this child.’ We were told 30% of people with TM did not survive, 30% survived with significant disability, and 30% recovered fully.

It took another two weeks of treatment, trial, error and some truly spectacular doctoring (on both ends of the spectrum) for our tiny boy to walk and talk (actually he talked a LOT better, but that’s a steroid related story for another day) and be strong enough to come home. He came through with some residual nerve damage that complicated an already complex toileting journey, but beyond that, he was back.

I didn’t tell the green lady all of that. I gave her the Cliff Notes. She was sick as a dog, and Billy was insisting on seeing how much of his almost 5ft frame he could cram onto a glass shelving unit.

But she listened and when I drew breath she said, ‘Why are you so calm about this?’

I said I’m not really. I’m like an emotional duck – smooth-ish on the surface, but beating myself with birch fronds underneath. But I am determined those in our position should share our stories as rationally as we can, otherwise it’s easy for people to dismiss said stories as perverse, money hating, conspiracy theorist, whale singing, dismissible nonsense.

And, they’re just not.

And even though she hastily thanked me and excused herself, with her hand over her mouth, the lady in the chemist understood that for the first time.

So, why am I forcing my figurative family slide show on random strangers?

I have all sorts of suspicions about the broader context around vaccination, just as I do about the safety of food and medication and public transport and building codes and international and domestic security.

(Did I mention I am Irish? We are quite fond of anticipatory catastrophising… which really means I should never ever have been put in this position in the first place, but I digress.)

Despite my underlying, nagging fears about protecting my child from what seemed like very remote-chance conditions given our lifestyle,  I did exactly as I was told. Mostly because I was terrified something would happen to my precious child.

I’d seen news stories about babies with whooping cough, which (despite its jolly name) doesn’t involve the good kind of whooping. I’d had measles and mumps. My memory of them didn’t involve much hilarity.

I definitely asked my doctor questions. I wanted to know about how safe the vaccines were (very, I was told). I wanted to know what was in them (non-live viruses, I was told). I wanted to know how to protect my baby from trauma (pre-emptive paracetamol, I was told).

So we vaccinated. Repeatedly.

We did everything we were told, and our son didn’t respond well. Instead of being protected from harm, he was walked into harm repeatedly. By us, the adults charged with his loving care.

Thankfully, his doctors (at a major children’s hospital) are open enough to acknowledge what has happened. It’s acknowledged as something they have seen many times… it’s not dismissed (as it is for so many other children). I’d be happier if we lived in a time when their views were openly discussed and shared, but we don’t.

Why?

Well, let’s go back to the stupid news article, and the ‘conversation’ about it. Let’s think about what people do when they read an article called ‘Six Myths about Vaccination’. They don’t research, they don’t question. People react.

There is no subtlety, no analysis, no discourse in articles that come with the word ‘myth’ in the title. And there is no subtlety in the response to them either.

Like most fear based discussions, people retreat to their safe corners, without taking more than a moment to acknowledge the validity of the other corners. Which (I’m guessing) feels awesomely righteous if you have a fully vaccinated child who sailed through the experience and is happily dancing toward adulthood. It must feel disturbing if you are a parent who thoroughly researched and made the decision to not vaccinate.

It feels like being kicked in the guts repeatedly when you are us.

So let’s get real about this.

Here’s what the Australian Government’s Understanding Childhood Immunisation booklet says about vaccination:

“Immunisation is a simple, safe and effective way of protecting children against certain diseases. The risks of these diseases are far greater than the very small risks of immunisation.”

Let’s start with ‘simple’.

You should read this, it’s freely available online. Most people don’t. I didn’t. None of it sounds simple to me, but hey, I’m not a doctor.

In addition to containing the immunising antigen(s), vaccines may also contain the following:

  – Adjuvants, which enhance the immune response to an antigen; an example is aluminium hydroxide.

 – Preservatives, which reduce the risk of contamination; some examples are 2-phenoxyethanol, which is also used in many cosmetics and pharmaceuticals, and thiomersal, which is used in the Q fever vaccine but is not present in any of the vaccines on the National Immunisation Program for young children.

 – Stabilisers, which improve the shelf-life and help to protect the vaccine from adverse conditions; examples are sucrose, mannitol, lactose and gelatin. Stabilisers are also used in most confectionery and many pharmaceuticals.

 – Emulsifiers or surfactants, which alter the surface tension of the liquid vaccine; examples are polysorbate-80 and sorbitol. Emulsifiers are added to most ice creams and many pharmaceuticals.

 – Residuals, which are minute or trace amounts of substances that remain after the manufacture of the vaccine; examples of residuals detectable in some vaccines are formaldehyde, antibiotics such as neomycin or polymyxin, and egg proteins.

Further details of a particular vaccine’s constituents can be found in either the product information (PI) or the consumer medicines information (CMI) for individual vaccines. This information is presented in the shaded box for each vaccine under the disease-specific chapters in Part 4 of this Handbook (current June 2012); however, it is important to note that PIs and CMIs are updated periodically. The most current versions of the PI (and CMI) for vaccines (and other medicines) are available from the TGA website (www.tga.gov.au).

I don’t use preservatives, emulsifiers, surfactants, residuals or adjuvants in the rest of my life. I have no idea why we think it’s OK to inject them into our bodies, but hey… the scientists know it’s safe right?

Hmmm… ‘safe’. Let’s look at safe.

Read this to see how vaccines are safety tested: TGA Vaccine Regulation Overview

(TL/DR: tested by the manufacturer, not an independent body or a government body, but by the manufacturer who stands to make untold millions from the acceptance of one vaccine into the national schedule. Not duplicated or validated, not even reviewed, simply viewed by an Advisory Committee and ratified. Not tested in combination with the other vaccines already in the schedule. Privately tested and risk assessed in the hen house, by the fox.)

The best possible outcome is that epidemiologically (statistically across the population) a vaccine can be shown to cause a minimal percentage of AEFIs – adverse events following immunisation.

Then, once they are added to the schedule, there’s the question of individual safety – actual AEFIs to consider.

The information no-one wants to acknowledge, is that adverse reactions to vaccinations happen. They, as the epidemiological (AKA ‘safety) data states, are uncommon. They are not, by any stretch of the imagination, statistically rare. Especially when you consider how few are reported and that even fewer are acknowledged.

Billy is someone who experienced a series of adverse reactions to vaccinations. Despite this, we were encouraged to continue. We did. He is now permanently disabled.

Would he always have been disabled? As his parents who have lived in such close proximity to him and his development, we do not believe so. We do not think there is anything close to evidence to prove he was ‘born disabled’ (and we have a LOT of video to back up our lived experience). Would he be ‘less’ disabled had we made different choices? Potentially.

Hilariously (and I mean that in the non-hilarious sense) many people feel a perfect right to insist we are wrong (and oddly NONE of them are doctors). The doctors, at least the experienced ones who have lived and worked for a long time in the company of children like Billy, absolutely agree with us. In fact, they were the ones who suggested it to us.

The most recent available Australian data on reported vaccine reactions is sobering.

Here are some facts:

“The overall AEFI reporting rate for 2011 was 10.4 per 100,000 population, compared with 17.4 in 2010. The AEFI reporting rate was the third highest for the period 2000 to 2011, after peaks in 2010 (17.4).”

It happens. It happened to us.

I’m not even close to saying all vaccination should cease, but that is only because I do not understand enough to say anything like that with any confidence. It’s clear to me it was not safe for us, and for a long time our doctors insisted it was, despite clear signs to the contrary.

I think we should find out who vaccination is safe for and who it isn’t safe for. Then, when people make a choice, they are making the right one for them – not for the economy, not for the statistics, not for their access to government benefits, but for their individual child’s health.

There’s no arguing that people dying unnecessarily of serious disease is something we want to prevent. Vaccinating abundantly against childhood diseases that rarely have serious side effects and against conditions that we may have very little chance of being exposed to… seems like economically driven overkill to me.

Let’s look at measles and hepatitis B.

The government’s own figures on the risks of serious complications from measles make it very clear that the risks of serious complications are low in unimmunized people. They are lower in immunized people. So, you can still get measles if you are immunized, according to the government. If you get measles naturally and fight it, you are immune for life.

So, now we are onto the issue of vaccination being ‘effective’. It obviously is, in the short term, for some people, but clearly, immunity is not guaranteed. If it was, vaccinated people would not get measles, and boosters would not be necessary.

There are numerous documented cases of disease outbreaks among vaccinated populations, highlighting the short term effects of vaccine mediated immunity –
Mumps
Measles
Chickenpox

Along with numerous simple analyses of the validity of herd immunity and the relationship between vaccine mediated immunity and passively acquired (maternal antibodies) immunity.

People are questioning, because there are valid questions to be asked. Big questions and little questions, broad societal ones and specific individual ones.

Hep B, is an easy vaccine to question.

The government’s own information on Hepatitis B explains how it is transmitted:

– perinatal transmission from infected mother to neonate (vertical transmission), usually occurring at or around the time of birth
 – parenteral or mucosal exposure to infected blood and other bodily fluids; common scenarios include:
* sharing of contaminated equipment that penetrates the skin, such as needles (among persons who inject drugs), tattoo equipment, body-piercing equipment, acupuncture equipment and razor blades
* needle-stick injury, for example, in a healthcare setting
* contact between infective body fluids and mucous membranes
* sexual contact (including vaginal or anal intercourse, although the latter is associated with a higher risk)
* non-sexual contact with an infected person (horizontal transmission), including household transmission, for example, child-to-child transmission through contact between open sores or wounds.

So… if I, as a mother was not infected (easy to ascertain) and had no plans to expose my child to anyone who was infected (again, easy to do), or to anyone who engages in any activity that might involve needles, razor blades or sexual activity with infected people (haven’t let him exchange bodily fluids with anyone like that yet) then he, as a newborn baby was vaccinated against hepatitis B because…

(INSERT YOUR ANSWER HERE BECAUSE CLEARLY THERE’S A GIANT GAP IN MY COGNITION THAT NEEDS FILLING)

So, vaccination not safe for everyone. It’s not effective for everyone. It is not simple for everyone. And there are some bizarre aspects to it that make no sense at all.

The issue here is very clear.

Whether you vaccinate or not is your business. However, it is a decision that requires thought and analysis. The decision cannot be made by your doctor because they are not you. The decision has to include your medical history and your family’s medical history.

It is a risk.

For some of us, the immediate risk level may be very low and for some that risk is very, very high. We do not know, with anything even resembling surety who is who (though I, personally would suggest anyone with a family history of auto-immune or metabolic issues or previous vaccine reactions could be given their own personal red flag right now).

If you have vaccinated and your child is OK, you are fortunate. Maybe a little, maybe a lot… but you are fortunate.

Maybe, rather than assuming people who choose not to vaccinate are idiots (acting on opinion, believing things that are not true, socially irresponsible), consider their position. It’s different to yours, but so is their DNA, and that is a crucial difference for many many reasons.

If vaccines work, then you are safe from infection. Then again, if vaccines worked, my son would not be disabled.

See what I did there?

It’s not simple. It’s not about facts or myths or right or wrong. It’s not black or white.

Life is full of grey, and this issue is among the greyest.

Now, go and play with your healthy kid. I’m here to answer any questions you have about our story (as long as you don’t threaten to vomit on me like the lady in the chemist).

PS. I truly hate that now that I have posted this, I am ducking for cover, awaiting the trolls and the nonsense that comes from posing questions about vaccine safety. May I remind everyone that I’m not even remotely interested in arguing. Accept the truth of my story. Take it elsewhere and use it for fodder if you wish.

But, please respect our position. We did not ask to be here, but now that we are, we think it irresponsible to remain silent, for all sorts of reasons.

We really need to get better at this.

  1. Great job with a very difficult subject. Your story breaks my heart and your strength to tell it inspires me. Xx

  2. Well written, a very sensible presentation of the ‘other side’. Thank you for writing it. (But yes ducking is unfortunately probably necessary – there’s nothing that angers people on the internet more than a vaccine damaged child).

  3. I thought you wrote that out beautifully. We have a child with a vaccine injury as well, and we have children that were vaccinated and were fine. We have a child who will never be vaccinated. We have the full spectrum, if you’ll excuse the pun. It’s such a personal choice, and such a difficult one to make. You were spot on in your statement that it is up to the parent, they should do their research, and we should not have to argue about the decision we’ve made to keep our own child safe, whichever way we’ve chosen.

  4. Thank you so much for sharing your story. I have two (mostly) vaccinated children who are both healthy. I know that I am lucky. I have been trying to get my brain around the vaccination debate recently and frequently run into people from both sides hysterically throwing out talking points with very few specifics. Hearing someone’s story, someone’s specific story of what happened to their child in connection with the vaccine was really helpful. Honestly, “vaccine injured” is a phrase that doesn’t hold a lot of contextual meaning for me. (I understand the words, but I have very little personal context that relates to the phrase.)
    I did want to say that you use both emulsifiers and preservatives in your day to day life. Sugar and salt are both preservatives and egg is a very common emulsifier. There are a host of food products that you cannot make without an emulsifier so even if you don’t use egg, you use something. The word simply means a product that will allow oil and water to mix.

  5. That is the most intelligent piece on the issue I have ever read and I am beyond sorry for your family and your son.
    I never questioned it myself, I was fully immunized as a child and actually still caught chicken pox twice, my brother measles..
    My oldest was fully immunized, even though my mother didn’t want me too, I have to be honest and say you know what I just trusted the government and the media and everything did it. I didn’t read pamphlets. I didn’t want to know. I just wanted my child to be safe and to be like everybody else and allowed in any school or child care.
    When she was in Kindy I was mortified at the way a mother was treated there whose kids were un-vaccinated. Mortified – yes as a mother of a fully vaccinated child.
    The mums blamed everything on her kids, every time something went around it was from ‘that family’. I started to think it very odd behaviour and that if these vaccines were so great why would it matter that her kids were not? If they didn’t protect the kids then what was their point at all?
    For 3 years of her life she had only organic food made from scratch, no salt, sugar, no chemicals. Lots of homegrown organics. I was obsessed with this and yet never once did any research about what was in those needled she had. It puzzles me even now why i didn’t.
    5 years later I had my second.
    A happy, easy baby, until she had the Hep B shot in the hospital.
    She went instant bright red from head to toe, temperature, rash all over and screamed non stop for 24 hours then on and off for 3 days. The nurses kept saying how shocked they were at the transformation and no-one knew how to help me, how to stop her screaming. She would not feed at all, her tongue swelled and went dry, she went all strange. The doctor said she had a reaction but would be fine eventually, and sent us home.
    She kept getting that rash on her body again and again for months.
    I saw 3 doctors afterwards and was advised by two that she very likely could have further allergic reactions and that she “might” be in the very tiny percentile that could be affected, This was not a risk I was willing to take so as a family we have chosen not to do any more with her and we have a medical exemption from the doctor.
    When I try and find information and support groups all I ever find is this war on the people who don’t, without any consideration as to why some people don’t.
    I would have even considered paying a large amount of money to have vaccines that did not have all the crap in them, safer ones, clean ones so it is not coming from a unemployed hippy stand point as you so often feel plonked into by the media at all.
    I would just like to be able to calmly talk to other mums about it..
    So as a mum of one fully vac and one not I thank you deeply for sharing your story in such an intelligent and calm piece that really, really meant something to me.
    Sending much love to you and your boy.
    Thank you.

  6. I loved your honesty, clarity and rational approach to this. Also I know where you are coming from. Also I too have experienced all the nonsesne replies you can get when you state the facts clearly and just as they happened. Good luck to you and your son. My son is six and I know his issues have been greatle worsened by the combination of genetic susceptibility and vaccines. I write a lot about these issues too. This article gives the full lowdown on the Whooping Cough Vaccine. http://thewritingowl.hubpages.com/hub/Pertussis-Vaccine-What-you-need-to-know-about-Immunizing-your-child-against-the-Whooping-Cough

  7. Fantastic. Good on you for sharing your story with honesty and research and heart. I hope more people hear your story to lead them to more questioning and education and consequent informed decisions.

  8. Valerie, thank you so much for sharing your story. It is a very well written and thought provoking article. People have a right to know, and to make fully informed choices. Thank you,

  9. Thank you for sharing your story. I have two vaccinated children as I didnt realise there was a case against and have been on the fence about when we have our next child. I think the fact that once its in them its a ‘stand back and cross your fingers nothing happens’ situation scares me to death. And then even if they do have them they could still get the illness anyway?! Very difficult decisions but I have a lot of respect for you and your family.

  10. Thank you for candidly sharing your thoughts and beliefs in relation to vaccinations. I do just want to mention your statement: ‘I don’t use preservatives, emulsifiers, surfactants, residuals or adjuvants in the rest of my life”. Detergent is a surfactant. Peanut butter typically contains emulsifier: meaning something that helps oily substances and watery substances blend together well. etc. It would be sad if people dismissed vaccines because of disquiet with unfamiliar words such as emulsifier or surfactant. As you say, it is important to be well informed on risks, especially if there is a family history of auto-immune disease or previous adverse reactions to vaccines. However, for balance, I hope commenters on this page are aware of parents who have shared the story of harm to their children after they elected to not vaccinate, ie Ian Williams and his son Alijah.

    • Someone else mentioned the emulsifier issue, so I’ll answer it here.
      For semantics sake, we use natural food emulsifiers (like egg) once we are sure there are no intolerances or allergies. We do not use chemical emulsifiers or surfactants or preservatives or additives at all. Not in our foods or in our home. We are a completely chemical free family, which we chose to do for Billy’s health.
      I think people should be deeply suspicious of all additives, preservatives, surfactants, long chemical words with no link to any thing we recognize… Just as a general rule. Whether you choose to use them after that suspicion, is of course, a personal choice.

  11. I started off following the vaccinate your child thing. Then my second came along. Her reaction was sleep apnea. After each vaccine she would stop breathing to the point of turning blue and needing stimulation. Interestingly if you look at the peak times for cot death, you will find a close correlation with the vaccine schedule. 22 years on we still do a lot of flack for our decision. Oddly enough, even from the child who had the reaction – she has since gotten vaccinated at uni. Such is the propaganda. My grandson was vaccinated after his fathers family left my 16 year old daughter petrified that he would get Whooping Cough if we (the unvaccinated) came near him. This was despite the fact that her 14 year old sister had whooping cough as a baby with no side effects, and the fact that she has lifetime immunity. Well, here we are 9 months later. He is fully immunized. His 2 year old cousin is fully immunized. BOTH of them, and their grandfather (who got the boosters) have Whooping Cough. It is a horrible disease. I wouldn’t wish it on anyone. But, a part of me laughs at the irony.

  12. BTW, what hospital was it who suggested vaccine injury? We get a lot of “why isn’t she vaccinated” stuff every time our 5 year old goes to the ER. She has Down Syndrome and lung issues, so it is quite often! We are in Brisbane, so usually at the Royal or Mater.

  13. I feel very lucky, reading this, that I didn’t have lasting effects from my vaccine reaction. As a baby, I had a seizure an hour after the triple antigen jab. My mother hasn’t even got home from the doctors office when it started, and I was still mid seizure when she got back to the doctor.
    The doctor investigated very thoroughly and his only theory was that my mother had passed on very high natural immunity to me, and introducing the immunisation sent my body into a violent reaction.
    As a result, I haven’t had the MMR as my natural rubella antibodies (again from mum, I’ve never had it myself) are over 500 – whereas a level of 10 is considered immune.
    Meanwhile, trying to get actual advice about the potential for a similar reaction in my kids has been impossible. The immunologist at Melbourne Royal Children’s Hospital refused to acknowledge that I had a reaction to an immunisation, and wrote a letter to my doctor basically alleging I am a hysterical mother who is anti immunisation.
    All I get is the “company line” that immunisations are wonderful and I should accept them without question.

  14. Thank you

  15. Our son showed signs of autism in infancy so our experience is not one that I would attribute to vaccines. That being said though just because it is not my experience doesn’t mean it hasn’t occurred. I think this is a very well rounded article that doesn’t contain any of the hysteria that is often present throughout this debate, so well done.

    I only want to share one story. I have a friend who much the same as you outlined, never planned to contract Hepatitis and took every precaution. However one day while working in a public place he came in contact with a carelessly discarded used needle and subsequently contracted, was treated for and now lives with Hepatitis. His story is thankfully not a common one however it is not something you can plan against getting. Discarded needles are often found in public places such as buried in tan bark at playgrounds and left on floors in public toilets.

    Our beliefs will always be based on our experiences and for as long as people go through life experiencing it differently we will all have different beliefs. That needs to be ok if we’re ever going to get along in this world. It is one thing to tell your story but as soon as you do so with the aim of changing others’ beliefs based on your own experiences you are no better than those who argue against you because their experiences and therefore their beliefs are different.

    There is no right or wrong, black or white, there is only individual experiences. Thank you for sharing your story however it in no way changes my experience or beliefs. I hope you are ok with that. 🙂

    I wish you all the best.

  16. Hi. So sorry to what has happened to your son. Have you heard about pyroluria? http://www.vitalityandwellness.com.au/pyroluria I have read the low B6 can cause seizures as well. If your son has pyroluria, he would be deficient in B6 and zinc.

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