Valerie Foley

Archive for September, 2013|Monthly archive page

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.

Unlucky…

In Action, Diet, Environment, Medical, Parent issues, Research, Supplements on September 8, 2013 at 2:33 am

Today, in Australia, we have a new government.

It’s not the one I chose, but it’s the one I’ve got, so I’ve got to work with it… Which is kind of how I feel about the lot my kid has been handed, health wise.

The doctors say he’s unlucky. We believe something different.

Sure, we may have passed on some things that made him vulnerable, but the choices we made (under medical supervision/duress) have not helped. We were uninformed, inexperienced and like so many others, we did as we were told – because we were assured it was right, by people we trusted.

Add that to an increasingly toxic world, poor poor nutrition dressed up as health food, completely unnecessary household protection products pervading every part of us… and maybe it’s easy to understand why we have a chronically ill child.

He’s not unlucky, he’s been forced to play a game where the odds are actively and massively stacked against him.

For the uninitiated, my excellent son Billy is autistic (atypical, verbal, sensory, intellectually delayed and yet defined HF).
He has GI issues (atypical, chronic constipation and reflux, not coeliac by the traditional numbers but completely unable to tolerate gluten as well as dairy/soy/additives).
He had an auto-immune disease called Transverse Myelitis (atypical, sensing a trend here?).
He has seizures (frontal lobe, mostly generalised, tonic clonic and… atypical).

We’ve managed the GI and auto-immune fallout with diet and supplements – GFCFSF, low sugar, no additives, omegas, probiotics, enzymes – the basic stuff. The seizures are almost two years old, and we are still in the process of navigating through the world of anti convulsants.

The first medication of choice – Epilim (depakote) failed to control the seizures so we increased the dose. It packed weight onto his body then just as quickly stripped it off, sedated him, sent his TSH levels skyrocketing and as an added atypical bonus gave him OCD. It was the OCD that convinced the neurologist to change medications, not because he was concerned (lots of autistic kids have OCD), but because we were.

The second (and current) medication, Keppra, isn’t controlling the seizures either and has induced what’s known in the trade as ‘keppra rage‘, or atypical behaviour changes common in autistic kids (if you are a neurologist). His recommendation? Increase the medication, to see if it will control the seizures. We really have to comply, at this stage, as the non-pharma options require failure of at least three medications before the neurologists will mandate their use. And, yes, though every instinct is screaming caution, we trust the neurologists. They are genuinely good, open minded people and they are a critical part of all we’ve got.

Billy’s tonic clonic seizures are infrequent (every couple of months), happen mostly, though not exclusively, when we are away from home and last up to three minutes (which, oddly seems like three long, slow hours). They could be much worse, which is heartening in a truly unexpected way. The doctors say there’s no real way of knowing whether something is causing them, or whether they’ve been there all along waiting to emerge (the ‘unlucky’ theory).

I know I write a lot about wondering why this is happening to my kid, but seriously, the question never gets old.

Mainly because I can’t help thinking that ‘He might just be unlucky’ isn’t much of an answer.

It’s not much for him, who has a long life ahead of him, with much medical challenge and little medical wisdom. It’s not much for us, who are frantically trying to plan for that life in the now, and in the never-never that does not include our presence. It’s not good for the many many people who share his challenges in a country and a world that can do so much better.

So, while the blue light folk are sharing peace, love and awareness (oddly without the mung beans which are GFCF and therefore unsupported by evidence), I’m keen to spread the ‘why?’

We have a new government in this country, which makes this as good a time as any.
We have a fast growing cohort of ‘unlucky’ kids – young people diagnosed with a condition that their parents didn’t have, that limits their life journey in myriad ways, that has no known cause or treatment.
We have to do something, right?

In the lucky country – hell, in any country, it’s not good enough.

So, my plan is to see if we can convince the economic rationalists that addressing autism causation will save them money, that knowing what it is will help us prevent it and the massive costs it manifests in the education/healthcare/social services sectors, that leading the world in interventions that actually reduce those costs would shine a positive light on them and their time in government.

If an election proves nothing else, it proves that luck has nothing to do with anything. It’s about strategy, focusing on the relevant information and pushing and pushing and pushing until you get the change you want.

Our new Prime Minister is definitely aware how that works…

I’ll play his game, if it gets the result for our kids. All I need to do is encourage him to understand how he could stack the odds in their favour.

And learn how to speak conservative without a bad smell look on my face.

I’m not sure which one will be harder.