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Reactions to MMR - how long do they last?

605 replies

MrsMoppetMama · 17/07/2012 18:45

My DD (13 months) had her MMR 11 days ago, she had a bad reaction after about 3 days (high temp and trouble breathing) and we took her to urgent care center. Although this has now passed, she seems to be really out of sorts and has stopped sleeping through. Her normal routine was brilliant as she went down from about 7 - 7. Now she is waking every two hours and is very unhappy. Is this normal? is this because of her MMR or is it just a phase? She has also stopped taking her bottle before bed, is it likely that she has weaned herself? Help! It's been pretty easy going with her up to now so a bit stressed by all this.

OP posts:
JoTheHot · 29/07/2012 21:15

Cote -

you say that for the MMR vaccine 'this risk is of course very high' and you define Risk = probability x how bad the outcome is

I appreciate a minority of people perceive the risk as being high, but to flatly state that it is 'of course very high' is untenable. The majority of the population and the quasi-entirety of the medical and scientific community assess the risk of MMR vaccination to be very low.

crashdoll · 29/07/2012 21:15

That's not to say handwashing is important of course.

crashdoll · 29/07/2012 21:15

Arrgghh *isn't

ElaineBenes · 29/07/2012 22:41

Saintly.
Couldn't agree more than the epidemioogical studies on mmr and autism are not methodologically flawed.

You are quite right that it is possible that there are some cases of mmr triggering or causing autism but that the studies were not sufficiently powered to pick them up. It's actually quite easy to work out the prevalence below which no effect would be shown in the studies. If you're interested, I'll number crunch it tomorrow on my computer at work as I have a power calculator spreadsheet so I just have to plug in the numbers. We can then see the prevalence for which your theory holds true. Given how highly powered some of these studies are, I'm pretty certain it'll be way below the 5-7% of autism cases I've seen bandied about (not sure where that figure comes from).

saintlyjimjams · 30/07/2012 00:04

TBH I don't see the point. There have been multiple problems with the studies to date. If you search the academic press/letters you'll find some of the concerns raised.

PigletJohn · 30/07/2012 00:24

I don't see the point either. If the numerous studies searching for a link between autism and MMR have failed to find one then there are a couple of possibilities

  1. a link exists but it is imperceptible
  2. there is no link

other possibilities are fanciful speculation.

If you search the research publications you will find numerous studies showing the same thing.

Dr Wakefield might as well have asserted that there is a celestial teapot orbiting the sun between mars and venus, but it is too small and too distant to be detected by any telescope. His believers might spend their lives criticising astronomers for being unable to see it.

ElaineBenes · 30/07/2012 00:42

The point is that posters here have bandied about 5-7% of autism cases caused by mmr without the slightest bit of evidence. I'm going to have a look at the numbers for my own interest. I have a feeling that its going to be very low,probably less than 1in 100,000 which would probably translate into 0.1% (which of course is not a demonstration of an association but simply leaves the possibility that the numbers are too small for an associatin to be detected).

But we're back again to square one saintly. So it's not that the studies are not sufficiently powered, but that there are methodological flaws in ALL the studies which show no link between autism and mmr. However, a study from the 60s showing vaccine damage is methodologically fine (its not, its a fine study but its flawed just like any other epi study, hence the umming and ahing which you find so amusing). Of course you havent applied a critical lens to it as you agree with the findings, A double standard methinks.

saintlyjimjams · 30/07/2012 01:47

What are you going on about Elaine? What have I said about the polio vaccine that so offends you? I haven't said anything negative about polio vaccination at all. I did say the benefit received from polio vaccination was obvious (compared to say mumps). I wasn't proving any sort of point with the polio/DTP data - more, tryi g to remember it. (And anyway, it's interesting).

The 5 to 7% figure has come from observation. It's a guesstimate - and appears to have been arrived at by various sources. At least different groups working have quoted to to me. I linked earlier to a published source (5% iirc in that case - and i gave his power calculations if you want to save some time). It makes sense to me because it pretty much fits my experience of autism (ie I know a lot of people with autistic kids, under ten percent of them link the start of symptoms with the MMR). It's not a robust figure but it reflects what I see in a sample size of a hundred-odd kids with autism.

Asides from the issues of subgroups there are other difficulties in working with autism data. For a start the time lag between the start of symptoms and diagnosis. Although some MMR reactions that could be a sign of impending autism will result in a timely trip to the doctors (seizures for example), many won't. And how long do you leave open for dx post MMR? That's just one (simplified) example. I'm sure you can identify many more of the problems that make it hard to draw conclusions.

From my own experience, we had infection at 11/12 months (ongoing in that time- including hospital visits). Then parental concern starting regarding developmental regression at 13 months (although not recognising autism - no contact with HCP), then parental concern re autism at 17 months (no contact with HCP), visit made to HV at approx 22 months - referral to specialist team. 2 year check passed, specialist SALT team observed at 27 months and dxed 'mild language delay, now improving'. Not seen again for 8 months (despite repeated parental requests to SALT service). Finally referred to multidisciplinary team age 3, dx made age 3. You can see the problem. At no stage did I visit my GP and ask about autism. And there will be no mention of autism in his records until age 3 (and no dx of severe autism until about age 6). That's despite parental concern starting at 13 months. So my concern regarding development started within 2 months of infection, my concern regarding autism specifically started within 7 months but there is no record of that at all in ds1's medical history and no visit made to any HCP regarding development until nearly a year after the infection. And then it was a HV, so maybe harder to track (I am making an assumption there as studies tend to look at GP visits). And diagnosis came 2 years post infection - relatively quickly as we moved - I was told the waiting list for assessment in our old borough was 2 years (!) so dx would have been 4 years after infection. I know from friends that in many cases their histories were similar. Some of my friends who implicate MMR do have 'neater' easier to follow medical histories as a couple had hospital visits, but not all.

It makes it much harder to track compared to say looking at seizures or hospital admissions (or even cases of paralysis post DTP). I wouldn't like to even try and make sense of it. But it does mean when reading the studies it's very easy to say 'woah what about.... X'

FWIW when I corresponded with the dept of health (prior to ds1's regression iirc) they did say they could never rule out the possibility of a small effect. Of course from their point of view small effects aren't all that important.

ElaineBenes · 30/07/2012 04:55

That's not so. 5% of autism cases being triggered by the mmr would easily be seen in these studies. Say 1in 200 children have autism, you're saying that there is a 1 in 4000 chance of the mmr triggering autism! Or have I done the maths wrong?

Even if there is some noise in the studies due to age of diagnosis meanings some kids who will be diagnosed are excluded due to the timing of the study (and some studies account for this), absolutely no way is 5% of autism cases a reasonable estimate (not forgetting that this is just even a theoretically possible number). Even 1in 10000 would be detected, if not 1 in 100000 in the very highly powered studies.

Of course the doh couldn't rule out a tiny effect, no one can. But you don't even have an accepted theory of how this may work. It would absolutely be wrong of the doh to change their policy when well designed and highly powered epidemioogical studies show no effect and there is only theoretical speculation and anecdotal evidence. Either your sub group is tiny or the additional risk to a larger group is tiny.

ElaineBenes · 30/07/2012 05:08

Lebfg
Is there a malaria vaccine? Or do you mean the prophylactic medication? I thought we were close to a malaria vaccine but not there yet (not enough money in it for big pharma to be seriously interested...)

LeBFG · 30/07/2012 07:13

This is the nature news article saintly linked to once I think. It's very good. It actually talks about malaria and anthrax vaccines under development. But the anti-vax brigade will just read one sentance out of context and thinks it supports their claims. I read it as a good pointer to developing more effective vaccines - and point readers to the bit that says Most existing vaccines, such as those for smallpox, polio and measles, are very effective...

CoteDAzur · 30/07/2012 08:12

"if the event has, in all scientific tests carried out throughout the world, shown a zero causitive connection with the action you propose, you might assign it a Probability rating of 0"

I wouldn't, actually, having heard the experiences of a large number of intelligent, articulate, and rational parents who are convinced that MMR has triggered their DC's regression. Unlike you, I am not prepared to completely disregard people like jimjam, Pagwatch, Beachcomber, and several good friends in RL whose DC I know and whose suffering I witness on a daily basis. Also, I know enough logic to know that absence of evidence does not mean evidence of absence.

Looking around me, I realise that this is a very small probability, but the outcome is so terrible, that the risk I perceive is not one I'm interested in taking. Especially when compared to the non-risk of an incredibly mild childhood disease like rubella against which I truly don't feel like "protecting" DC.

CoteDAzur · 30/07/2012 08:25

"In your paper, the people vaccinating or not do so based on perceived risk i.e. perception of vaccine damage, not actual risk."

In order to understand what a Game Theory paper is saying, you need to know a minimum about this subject. GT always considers perceived risk, because it is a study of personal decision making.

"The authors are not saying the reaction is rational"

Again, you need to read a bit of GT to know that it is a study of rational behaviour - i.e. what individuals do, given their goals, personal risk assessments, maximising their own utility functions.

Take a look at the conclusion:

For any perceived relative risk r > 0, the expected vaccine uptake is less than the eradication threshold, i.e., P < p crit (Fig. 1). This finding formalizes an argument that has previously been made qualitatively (8, 14); namely, it is impossible to eradicate a disease through voluntary vaccination when individuals act according to their own interests. In situations where vaccination is perceived to be more risky than contracting the disease (r > 1), one would expect, even without the aid of a model, that no parents would vaccinate their children.*

I hope that is clear now.

"...they are simply showing what happens in a population based on some simple starting rules of individuals' behaviour."

That is what GT does Smile

"And in addition, people behave as their neighbour does - "if others stop vaccinating the risk must be really high""

Not true at all. Those who just do what everyone else does just go and vaccinate. It is the ones who have read a bit on the controversy or know people with vaccine-damaged DC who then refuse some vaccines, going against what all their neighbours do.

CoteDAzur · 30/07/2012 08:30

" I love "however small the probability of triggering autism in their babies might be, it is not a risk worth taking" what, even if the probability is zero? "

Oh you love it, do you? Seriously, have some respect for people like Pagwatch whose DC have regressed following vaccines Hmm

As I said many times before, the only way you can consider that probability zero is by assuming that parents like Pagwatch are complete idiots. I am not prepared to do that, therefore that probability is not zero.

LeBFG · 30/07/2012 08:33

Well this debate ultimately boils down to your point piglet. No one can guarantee that my son won't have a unique mitochondrial mutation meaning he would react to the MMR and develop autism. No one can guarantee either that the first time he runs the 100m a fatal weakness in his heart means he'll keel over and die. Or that he'll contract flu after not being vaccinated and suffer a unique immune reaction rendering him paraplegic.

The anti-vaxers are overly fixated by the risk of vaccination, consistantly over-inflate the probability of vaccine damage and under-estimate the risks of disease damage.

Of course, I'm not really going to dispute your discission to not vaccinate Cote - you have carefully thought-out the reasons not to do so. I just find it surprising that in other debates you'll argue the opposite. There IS a probability that homeopathy works, or reiki or magic in the stones, the evidence IS absent...and I'm sure you've come across many smart and intelligent people who swear they've been healed (I definately have). So in all respects, the debate is the same....with the exception that the small probability is autism not healing. And to bore on yet again, when comparing risks, it really is a whole lot more likely your DC will end up disabled or dead from driving, walking across the road etc.

CoteDAzur · 30/07/2012 08:35

JoTheHot - re "you define Risk = probability x how bad the outcome is"

That is not my definition. It is how risk is calculated, as a function of probability and outcome value.

"I appreciate a minority of people perceive the risk as being high, but to flatly state that it is 'of course very high' is untenable."

It is, actually. See above calculation. As soon as people are aware of that possible outcome of regression, albeit with a small probability of actually happening, the risk value becomes significant and quite probably higher than the perceived benefit of the vaccine.

"The majority of the population and the quasi-entirety of the medical and scientific community assess the risk of MMR vaccination to be very low"

They assess the probability to be very low, which is exactly what I have said on numerous occasions. And probability is not the same thing as risk, again, see above.

saintlyjimjams · 30/07/2012 08:36

Elaine - that 'noise' is important if it messes up the assumptions in the analysis.

Ds1 is back from respite & I have to catch up on work when he is asleep tonight so I don't have time to critique every study so far. If you can find one that is sufficiently powered. and that isn't flawed due to non consideration of the sorts of things mentioned in my previous post please share. I think the largest study to date is the Danish one by Madsen - but that had many problems including underestimating autism in the younger age groups (very low autism rate found as well iirc - apologies if incorrect I don't have time to re-read.)

CoteDAzur · 30/07/2012 08:43

"I'm not really going to dispute your discission to not vaccinate Cote"

The reason why I started talking about risk, probability, and GT is to show people that those who don't vaccinate are not irrational morons. That there is logic behind it, recognised by people who study decision-making.

"I just find it surprising that in other debates you'll argue the opposite."

No I don't.

"There IS a probability that homeopathy works, or reiki or magic in the stones, the evidence IS absent"

Not true. There, what we have is evidence of absence - i.e. scientific, indisputable truth that they don't work better than placebo.

There is no contradiction here. I'm hard to convince, which is why I'm an atheist and a general opponent to woo "therapies" like homeopathy, reiki, crystals, etc.

I am also very risk-averse when it comes to DC, which is why I refuse to take the chance, however small of permanent & irreversible neurological damage to them.

saintlyjimjams · 30/07/2012 08:45

Um, I don't under estimate the risk of disease. I'm well aware of the risks of each disease for which there is a vaccination. I have experience of some of the issues. Deaf mother, had measles myself, grew up next to a rubella baby, baby ds2 exposed to whoooing cough. I've read an uunderstood the risks of the less common diseases. I have had plenty of brushes with diseases that are vaccinated against.

I'm also lucky enough to live with severe autism.

My decisions are made with the benefit of experience . Please let's not pretend I'm shutting my eyes and imagining all will be well in happy land.

Anyway - I have to go as we're about to reach crisis here. I won't be able to reply - I'm not ignoring anyone.

LaVolcan · 30/07/2012 08:47

The anti-vaxers are overly fixated by the risk of vaccination, consistantly over-inflate the probability of vaccine damage and under-estimate the risks of disease damage.

By the same token others would argue the pro-vaxers under-estimate the risks of vaccination, consistently under-inflate the probability of vaccine damage and are overly fixaged by the risk of disease damage.

So where does that all get us?

LeBFG · 30/07/2012 09:04

But cote, have ALL the woo things been tested for ALL medical conditions? While they haven't, there is indeed absence of evidence. It could just be the case that reiki can cure some random spot infection, we just haven't tested it yet.

risk = prob x good/bad outcome

prob winning lottery v. low
outcome would irreversibly change my life
plug in the appropriate numbers = worth me spending 10% of my income of lottery tickets

prob dying in plane crash over life time: 1:44135 (0.000023)
outcome fatal! what's my life worth? 100 000 000 000
risk = FGS yes! never go in a plane for the rest of my life.

You can play around with this equation as much as possible to suit what you've already decided on doing...

Is there no lower limit below which you would accept the risk of autism? Let's say you could do a genetic assay of your partner and it turns out you have a 0.0005% chance of having a DC develop autism - would you change partner, not have kids? Have you even looked up environmental triggers of autism? Did I read somewhere that air pollution can trigger autism? I hope your not planning on visiting any cities with your DC.

CoteDAzur · 30/07/2012 09:26

"have ALL the woo things been tested for ALL medical conditions?"

What, the infinite permutation of all substances with all conditions? Er, no Hmm

What has been tested are the specific claims - a certain homeopathic "remedy" heals this or that condition. All found to be false. That is not absence of evidence, it is evidence of absence.

There are people who don't go on planes and there are many others who buy lottery tickets every week, so yes, they seem to make those calculations.

I'm not sure what you are trying to say with the rest of your post. If environmental factors have any effect, they would be slower and therefore more difficult to assess. Unlike a vaccine, where the impact has been immediate, with DC ending up in ICU, and regression starting immediately.

A better comparison would be: Would you go live near power lines/electric power station, knowing that no scientific study has found a correlation between them and childhood cancer, but also knowing that people living near them has come up with unusually high rates of cancer? I wouldn't, because I can just as easily go live somewhere else, and the low probability that medical establishment might be wrong those people's stories might actually be true and the risk it poses is just not worth it.

There is now ample evidence suggesting that living near power lines/electric power substations causes childhood cancer, but this wasn't always the case. There were times when scientific community was saying there is no proof, that these parents are deluded, looking for someone to blame.

No doubt you see where I'm going with this.

LeBFG · 30/07/2012 09:57

Ermm - surprisingly (and no doubt flawed in some way because, unlike the vaccine/autism debate which is at least rooted in science, I really just don't believe it) there are at least two meta-studies showing an above placebo effect for some homeopathy 'drugs'. hHere and here. I don't believe it will happen, but the possibiliy nonetheless exists that homeopathy DOES work. I'm a dyed-in-the-wool atheist but nonetheless accept god may exist. (prob of a god: very low x negative outcome for not believing: eternity in hell - perhaps I should reassess this decision Hmm).

The second half of my post was to tackle what I see as a single obsession with one potential trigger of autism (and an obsession with autism per se but that's another topic). I'm trying to see how low a probability you would accept before vaccinating.

If we could definatively say all people with an extremely rare mutation develop autism with MMR, and no other people, but we couldn't test this before vaccination (i.e. we know the prob but not who's at risk) and incidence of this mutation was 1 in a billion i.e. there are 7 people in the world at risk, by your reckoning, you STILL wouldn't vaccinate as the outcome would be too bad.

LeBFG · 30/07/2012 10:01

I'm afraid I don't accept your argument wrt to the power lines:

knowing that no scientific study has found a correlation between them and childhood cancer, but also knowing that people living near them has come up with unusually high rates of cancer?

If I KNEW that people living near them had high rates of cancer then I imagine the studies would have found the same link. Ergo: wouldn't chose to live near them.

CoteDAzur · 30/07/2012 10:36

"If I KNEW that people living near them had high rates of cancer then I imagine the studies would have found the same link."

Ah, but it doesn't, always. Or it doesn't find the link immediately. Maybe the initial studies look at overall childhood leukaemia rates and concludes they haven't increased since families started living near power lines - not the correct hypothesis to test at all. Years, perhaps decades pass before the correct hypothesis is tested with a properly funded experiment and/or the technology is available to look at cellular changes.

The question is what do you do until then? Go live near power lines because no such study has yet established the link? (You) Or go live somewhere else because the risk is just not worth taking? (Me).