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Discussion Starter · #1 · (Edited)
I posted this in another thread but thought it deserved its own.

Dravet's syndrome is a life-threatening form of epilepsy in infancy which becomes life-long. It can be triggered by fever or even hot temperatures. Vaccines have been noted to cause early onset of Dravet syndrome in children who are predisposed. However, vaccine recommendations do not change for these children, even with the high risk of severe seizures they could experience after vaccination. In fact, they are encouraged to get vaccinated due to risk of fevers from possible exposure to infectious disease. A doctor in the article from 2010 below indicates that these children would have developed the disease anyway, so vaccinating cannot be labeled as the cause.

Pertussis vaccination may trigger an earlier onset of Dravet syndrome in children who are destined to develop the disease because they possess a genetic abnormality.

Dravet syndrome, also known as severe myoctonic epilepsy of infancy, is characterized by seizures that start around 6 months of age and intellectual disability that starts from the second year of life. About 70% to 80% of children with Dravet syndrome have mutations in the gene for the sodium channel SCN1A...

"Stories about children who were healthy and then developed severe seizures and brain damage after a vaccination are an understandable source of anxiety for parents," Dr. McIntosh said. "What the current study shows is that in some of these children, the DPT vaccine might trigger the onset of Dravet syndrome at a slightly earlier time. However, this is not a reason to withhold or delay the vaccination."

The study also shows that vaccination does not affect outcome, she added.

"The important message to come from this and other scientific evidence is that vaccination may occur around the time that some severe disorders become obvious, but it is not the vaccination itself that causes the disorder. In fact, vaccine is a relatively safe way to prevent the sort of childhood illnesses that can have very severe consequences. In the case of these children who have the genetic abnormality, Dravet syndrome would have developed anyway.
http://www.medscape.com/viewarticle/721291

This little girl's story tells just how awful this syndrome is, how they could lose their child after any seizure, and how it all started shortly after routine vaccination:

Isla had her first seizure aged eight weeks old, shortly after a routine vaccination.

What started as a few spasms soon turned into seizures.

A genetic test eventually revealed Isla had a mutation of the SCN1A gene, which links to Dravet Syndrome.

“We had to be tested but they didn’t find the gene. They don’t know if the vaccination triggered the mutation or not
http://www.mirror.co.uk/news/uk-news/girl-aged-4-sick-celebrate-6448543

I also stumbled on another article where a child with Dravet syndrome couldn't be immunized due to the condition and state of her health. These children struggle for their lives as is.

So the question is, why are these children being recommended vaccination, yet another trigger, when they can experience severe seizures at the slightest fever (vaccines cause fevers)? Does this seem right?

They have found that acellular pertussis vaccination causes less seizures than whole-cell but all vaccinations are a risk for seizures. Therefore, they recommend all who have hesitated continued vaccination after seizures from whole-cell to get "caught up" with vaccination of acellular.

Any thoughts on this?
 

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Dravet is a genetic disorder. Vaccines cannot change your genetic code. So, no, vaccines aren't causing dravet syndrome.

But once the syndrome has been detected and diagnosed, I would consider it a valid medical reason to stop vaccinations.
 

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Short version:

Dravat onset, which typically happens in the first year, often proceeds a fever.

The vaccine itself might not cause Dravat's, but the the fever caused by vaccines could trigger it.

As Dravats is fairly horrific, and always has a onset quite early in life (this link says before 1 year: http://www.dravet.org.uk/what-is-dravet-syndrome/) I think it makes sense to try and avoid fevers if you can in the first year of life. This is not undo-able, but you can stack the deck in your favor in trying to avoid fevers in the first year by avoiding vaccines :wink:)
 

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That's a 0.00003% chance your child might have dravet.

Okay.

The risk, for me, is too little for me to even consider when I evaluate the benefit/risk ratio of vaccines.
 

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That's a 0.00003% chance your child might have dravet.

Okay.

The risk, for me, is too little for me to even consider when I evaluate the benefit/risk ratio of vaccines.

And your chances of getting polio are about 500 out of 8 billion....so 1/16 000 000. Far less than Dravat's.

The nature of vaccine discussion often involves discussing/comparing things with fairly small real world risks, whether you vaccinate or not.

I won't hound you though...if you think the diseases are scary or prevalent enough to warrant early vaccination, I think you are wrong, but it is your call.
 
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Op, I saw this article, which I like (pro-vaxxer might like it, as it is pro-vax, but at least it acknowledges they do not have answers and the complexity of the questions)

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3152151/

"Therefore, studies such as the McIntosh paper (1) have important implications. Several relevant questions arise: 1) How should doctors advise parents before vaccinations? What should be said to parents? Should all parents be warned about the potential triggering of Dravet syndrome, a rare disorder affecting about 1 of 30,000? 2) How can we identify children that might be susceptible to developing Dravet syndrome? 3) Do all children with the SCN1A genetic mutation develop the full expression of the disease? 4) Can a vaccination be deferred or not given, thereby possibly preventing or delaying the onset or expression of Dravet syndrome? None of these questions have answers at this time, but prospective studies and treatment protocols are needed to try to find the answers. At present, retrospective chart reviews like the cited study are all we have, but, at least, it is a beginning."
 
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And your chances of getting polio are about 500 out of 8 billion....so 1/16 000 000. Far less than Dravat's.
That is not how you calculate that kind of risk in epidemiology. 8 billion people are not all susceptible to getting polio. The vast majority are immune via natural immunity or via vaccine. You divide the number of cases over how many are not immune to polio. Further, the numbers are only going to remain low as long as people vaccinate. Remember, the majority of polio cases are asymptomatic.

It would be like calculating a woman's risk of developing ovarian cancer in the us by dividing the number of cases of ovarian cancer over the entire population of the US. Obviously, that isn't going to give you the right number. Half the population (men) cannot even get ovarian cancer so the risk is going to look much smaller than it really is if you try and calculate it that way.

Ditto the ridiculous non-vax math of saying the risk of an unvaccinated child developing measles is 1 out of some ridiculously small number they get by dividing the number of measles cases over the entire US population. Sorry, it does not work that way in epidemiology.
 
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That is not how you calculate risk in epidemiology. 8 billion people are not all susceptible to getting polio. The vast majority are immune via natural immunity or via vaccine. You divide the number of cases over how many are not immune to polio. Further, the numbers are only going to remain low as long as people vaccinate. Remember, the majority of polio cases are asymptomatic.

It would be like calculating a woman's risk of developing ovarian cancer in the us by dividing the number of cases of ovarian cancer over the entire population of the US. Obviously, that isn't going to give you the right number. Half the population (men) cannot even get ovarian cancer so the risk is going turn out being much smaller than it really is if you try and calculate it that way.

Ditto the ridiculous non-vax math of saying the risk of an unvaccinated child developing measles is 1 out of some ridiculously small number they get by dividing the number of measles cases over the entire US population. Sorry, it does not work that way in epidemiology.
Well, that is interesting. What are the real risks that a current teenage girl will develop cervical cancer from HPV if she skips the vaccine? What reduction in risk occurs from getting the vaccine?
 

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Op, I saw this article, which I like (pro-vaxxer might like it, as it is pro-vax, but at least it acknowledges they do not have answers and the complexity of the questions)

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3152151/

"Therefore, studies such as the McIntosh paper (1) have important implications. Several relevant questions arise: 1) How should doctors advise parents before vaccinations? What should be said to parents? Should all parents be warned about the potential triggering of Dravet syndrome, a rare disorder affecting about 1 of 30,000? 2) How can we identify children that might be susceptible to developing Dravet syndrome? 3) Do all children with the SCN1A genetic mutation develop the full expression of the disease? 4) Can a vaccination be deferred or not given, thereby possibly preventing or delaying the onset or expression of Dravet syndrome? None of these questions have answers at this time, but prospective studies and treatment protocols are needed to try to find the answers. At present, retrospective chart reviews like the cited study are all we have, but, at least, it is a beginning."
There have been studies since that was written, like this one from this year.

http://www.medscape.com/viewarticle/849190#vp_1 which corroborates other studies (like this one which notes "Vaccination should not be withheld from children with Dravet syndrome – even though vaccination is associated with earlier onset of seizures – because clinical outlook is unaffected by vaccination before or after disease onset, say experts in June's The Lancet Neurology and Online First.

The authors of the retrospective study say that although they found that onset of the neurological disorder Dravet syndrome may occur earlier in immunised children, the children were destined to develop the condition anyway, and were no worse off in terms of outcome than children who received vaccination after onset of the disease." )

In both studies, there were children who started having seizures before they received any vaccines and found the outcomes to be the same either way.
 

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Interesting.

Of course with such a rare syndrome they can't do "real" science. Instead they just have to compile case studies.

Isn't that neat that case study compilations can add up sometimes and be totally trashed other times?
 
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Interesting.

Of course with such a rare syndrome they can't do "real" science. Instead they just have to compile case studies.

Isn't that neat that case study compilations can add up sometimes and be totally trashed other times?
Those weren't case studies...
 

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That is not how you calculate risk in epidemiology. 8 billion people are not all susceptible to getting polio. The vast majority are immune via natural immunity or via vaccine. You divide the number of cases over how many are not immune to polio.Further, the numbers are only going to remain low as long as people vaccinate. Remember, the majority of polio cases are asymptomatic.


Ditto the ridiculous non-vax math of saying the risk of an unvaccinated child developing measles is 1 out of some ridiculously small number they get by dividing the number of measles cases over the entire US population. Sorry, it does not work that way in epidemiology.


Of course not everybodies risk for getting Polio is the same. My risk, sitting in Canada, is far less than if I was in Pakistan. The risk of Dravats is not equal either. One of the links I posted said that those with Dravats often had epilepsy in their family tree. Everybody who posts here knows that figures such as 1/30000 or 1/ 16 million are generalised. I think you were just looking for an excuse to trot out "ridiculous non-vax math." A tad lame.
 

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Of course not everybodies risk for getting Polio is the same. My risk, sitting in Canada, is far less than if I was in Pakistan. The risk of Dravats is not equal either. One of the links I posted said that those with Dravats often had epilepsy in their family tree. Everybody who posts here knows that figures such as 1/30000 or 1/ 16 million are generalised. I think you were just looking for an excuse to trot out "ridiculous non-vax math." A tad lame.
No it isn't a lame excuse to "trot out ridiculous non-vax math".

I see those kind of numbers thrown around here all the time. "There were 200 cases of measles out of a population of 319 million. The risk of my kid getting measles is less than 1 out of a million" etc which is simply not true. The risk is much much higher than that.
 

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And the risk for any current teenage girl of ending up with cervical cancer is much much lower than the pro-vax numbers that have been thrown around.

Bad math happens all around the circle and quite a lot of it is on the pro-vax side.
 
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Those weren't case studies...
Even better. So they didn't have published case studies to go with, they just dug through the medical records of all the cases of Dravet's they could find.

Weak.
 
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Here is the Lancet study it discusses. Full text (yipee!)

http://www.thelancet.com/journals/laneur/article/PIIS1474-4422%2810%2970107-1/fulltext

The study was small and compared those who had onset of Dravats near a vaccine and those who had onset at some other point. It is not a study that compares rate of Dravats in the unvaxxed versus Vaxxed (which would be hard to do - Dravats is not that common, and finding enough unvaxxed with Dravats might be difficult) .

The study shows that vaccination typically pushes the date of onset of Dravats earlier.

The study also said:

"There were no differences in intellectual outcome, subsequent seizure type, or mutation type between the two groups (all p values >0·3). Furthermore, in a post-hoc analysis, intellectual outcome did not differ between patients who received vaccinations after seizure onset and those who did not."

But this is not what the study shows:



The numbers are really small (probably so small that coming to any conclusions, as the authors did, seems premature) but what I am seeing is that those who had vaccine onset Dravats (and also likely had an earlier onset of Dravats) have a higher rate of regression and more severe intellectual disability than those who did not have Vaccine onset Dravats.
 

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Discussion Starter · #17 ·
@teacozy:

Have you read about Dravet syndrome, or any stories about the children who are dealing with it on a daily basis? If so, do you stand by the recommendations to not withhold vaccination from these children? Do you agree with adding an additional trigger, like vaccines that cause fever, to children who are already struggling with seizures at the slightest temp change, or even when they are excited due to increase in temperature, another seizure which could kill them? Add to it the stress of getting a "shot" and the risk gets even worse.

As it affects many different parts of the brain, there are a number of different triggers for seizures, as opposed to other epilepsies that might only affect one site.
 

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The study was small and compared those who had onset of Dravats near a vaccine and those who had onset at some other point. It is not a study that compares rate of Dravats in the unvaxxed versus Vaxxed (which would be hard to do - Dravats is not that common, and finding enough unvaxxed with Dravats might be difficult) .


The study also said:

"There were no differences in intellectual outcome, subsequent seizure type, or mutation type between the two groups (all p values >0·3). Furthermore, in a post-hoc analysis, intellectual outcome did not differ between patients who received vaccinations after seizure onset and those who did not."

But this is not what there study shows:
Only if you don't understand p values or the concept of statistical significance.
 

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@teacozy:

Have you read about Dravet syndrome, or any stories about the children who are dealing with it on a daily basis? If so, do you stand by the recommendations to not withhold vaccination from these children? Do you agree with adding an additional trigger, like vaccines that cause fever, to children who are already struggling with seizures at the slightest temp change, or even when they are excited due to increase in temperature, another seizure which could kill them? Add to it the stress of getting a "shot" and the risk gets even worse.
What do you think the affect of a child with Dravet Syndrome getting pertussis, measles, mumps, chicken pox, meningitis, rotavirus, etc would be?

I think there are some vaccines that wouldn't be worth it (like Polio for example) but for others I think the risk of leaving them vulnerable to disease is greater than the risks of vaccines.

In the medscape link they note that nearly 70% of the children with Dravet had been hospitalized for non vaccine preventable infections (VPDs weren't reported in the medical files).
 

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Only if you don't understand p values or the concept of statistical significance.
Actually, I do.

In this case the numbers are so small that they cannot be sure the results were not random. More studies are needed. Did they call for more studies to look into level of cognitive disability in relation to Dravat's onset ? No. Did they make sweeping statement they probably shouldn't have? Yes.

read this if you are interested:
http://allenfleishmanbiostatistics.com/Articles/2012/01/13-p-values-in-small-samples/

"More often than not, having small sample size would preclude achieving significance (see my blogs on ‘1. Statistics Dirty Little Secret’ and ‘8. What is a Power Analysis?’). When N is small, only very large effects could be statistically significant."

Handy, isn't it?
 
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