Tag: Dravet syndrome

Diagnosing Vaccine Injuries

Vaccines are often described as one of the greatest public health achievements of the 20th century.

That great benefit also leaves no doubt for most people that getting vaccinated and fully protected far outweighs the very small risks that vaccines might have.

Vaccine Injuries vs Vaccine Side Effects

Vaccines can certainly have side effects.

Fever, pain at the injection site, and redness and swelling where the shot was given are all common, mild problems that can be associated with almost any vaccine.

Some vaccines might also commonly cause fussiness, tiredness or poor appetite, and vomiting within 1 to 3 days of getting the vaccine. Others can cause a rash, headache, or muscle and joint pain for a few days.

Even syncope or fainting can commonly occur within 15 minutes of teens getting a vaccine.

Other vaccine side effects can include persistent crying, nodules at the injection site, limb swelling, and febrile seizures, etc.

These are well known vaccine side effects that are often minor and temporary though.

Is It a Vaccine Injury?

Although the term is typically associated with the anti-vaccine movement, as they tend to think everything is a vaccine injury, it is important to understand that vaccine injuries, although rare, are indeed real.

After all, vaccines are not 100% safe.

In addition to the milder side effects listed above, vaccines can very rarely cause more serious types of adverse events or injuries, including:

  • life threatening allergic reactions
  • brachial neuritis (shoulder pain and then weakness) following a tetanus containing vaccine
  • encephalopathy/encephalitis following a measles, mumps, or rubella, or pertussis containing vaccine
  • chronic arthritis following a rubella containing vaccine
  • thrombocytopenic purpura (ITP) following a measles containing vaccine
  • vaccine-strain measles viral infection in an immunodeficient recipient following a measles containing vaccine
  • intussusception – following a rotavirus vaccine
  • shoulder injury related to vaccine administration – SIRVA

Keep in mind that some of these are just table injuries and are not necessarily proven as being caused by vaccines.

And while vaccines are associated with some serious adverse events, the research is clear that vaccines are not associated with autism, SIDS, and shaken baby syndrome, type 1 diabetes, multiple sclerosis, inflammatory bowel disease, or other so-called vaccine induced diseases.

Or Is It Just a Coincidence?

Dr. Samuel Johnson once said that “It is incident to physicians, I am afraid, beyond all other men, to mistake subsequence for consequence.”

How does this apply to diagnosing vaccine injuries?

Too often we forget that just because one event is subsequent (happens after) another, it does not mean that it was a consequence (was caused by) the first event. It is another way of saying that correlation does not imply causation.

This is also highlighted by missed vaccine stories, events that would surely be blamed on a vaccine injury, except that a vaccine was never actually given for one reason or another.

Most pediatricians have these types of missed vaccine stories, such as:

  • an infant who begins vomiting on the way home from a well appointment and is diagnosed with intussusception (9 month old visit and didn’t get any vaccines)
  • a 4 year old who developed encephalitis just one week after his well check up (no vaccines – DTP had been deferred to his 5 year old visit)
  • a 2 month old who died of SIDS on the night of his scheduled well child visit (no vaccines as they had forgotten to go to the appointment)
  • a 4 month old who had a seizure at his well child visit (no vaccines were given yet as they were still being drawn up)

Or they have kids who begin to have symptoms or are diagnosed with a condition right around the time of a check up when they would routinely get one or more vaccines, but haven’t yet. From diabetes and POTS to transverse myelitis, some parents would have blamed their child’s vaccines if they had actually been vaccinated at that time and subsequently got diagnosed.

My own son started getting migraines when he was 12 years old and about to start 7th grade. Should I blame his headaches on his middle school booster shots? While it would be convenient, it is more likely that genetics are to blame. I started getting migraines at about the same age, and he began getting them just before he got his booster shots.

Diagnosing Vaccine Injuries

How do you know if your child had a true vaccine injury?

Does the reaction fit into the vaccine injury type AND “time period for first symptom or manifestation of onset or of significant aggravation after vaccine administration” as described in the NVICP vaccine injury tables?

That time period, also known as a risk interval, is when “individuals are considered at risk for the development of a certain adverse event following immunization (AEFI) potentially caused by the vaccine.”

For example, did your child develop an anaphylactic reaction within four hours of getting the DTaP vaccine? While a reaction 14 hours after the vaccine would be much less likely to be caused by the vaccine, if it occurred within 4 hours, that could certainly be a vaccine injury.

How about a child who developed thrombocytopenic purpura 90 days after getting his MMR vaccine? That is unlikely to be a vaccine injury, as the MMR vaccine typically causes TTP within 7 to 30 days.

If you think that your child has had a vaccine injury, be sure to talk to your pediatrician. You should also report any vaccine reaction to Vaccine Adverse Event Reporting System (VAERS) and if you truly believe that your child has been injured by a vaccine, you can file a claim with the National Vaccine Injury Compensation Program (VICP).

“You may file a claim if you received a vaccine covered by the VICP and believe that you have been injured by this vaccine.”

What You Need to Know About the National Vaccine Injury Compensation Program (VICP)

How will your pediatrician figure out if it is a vaccine injury? Among the things that they will consider when evaluating a reaction after a vaccine will be the answers to some key questions, including:

  • Is there any evidence that something else caused the reaction? While getting a vaccine could cause an anaphylactic reaction, so could the fact that your child just eat a peanut butter and jelly sandwich.
  • Is there a known causal association between the reaction and the vaccine?
  • Is there strong evidence against a causal association between the reaction and the vaccine?
  • Is there a laboratory test that implicates the vaccine as a cause of the reaction?
  • If the reaction is an infection, did it have a vaccine or wild type origin?

Your pediatrician will also consider other factors when making a decision, including whether other patients were affected (might implicate a contaminated vaccine), and will make sure that the original diagnosis is correct.

Being able to answer all of these questions often puts pediatricians in the unique position of correctly evaluating potential vaccine injuries. There is even a standardized algorithm that can help your pediatrician collect and interpret all of the data they will get when evaluating a possible vaccine injury.

Another algorithm can help evaluate and manage suspected allergic reactions, including immediate or type 1 hypersensitivity reactions and delayed type 3 hypersensitivity reactions. If the reaction is consistent with an allergic reaction and additional doses of the vaccine are still needed, possible next steps in this algorithm include serologic testing for immunity and skin testing with the vaccine or vaccine components.

For extra help, your pediatrician can consult an allergist or immunologist before considering giving your child another vaccine, if necessary. Experts at the Clinical Immunization Safety Assessment (CISA) are also available for consults about suspected vaccine injuries.

Over-Diagnosing Vaccine Injuries

In addition to vaccine side effects and vaccine injuries, it is much more common for children and adults to develop health problems and symptoms after getting a vaccine that have nothing to do with the vaccine. These are events, sometimes tragic, that would have happened even if they had not been vaccinated.

Anytime we see a post about vaccines and SIDS, we know what happened, an anti-vaccine Facebook group is taking advantage of a grieving family.
Anytime we see a post about vaccines and SIDS, we know what happened, an anti-vaccine Facebook group is taking advantage of a grieving family.

Despite the evidence against it, some parents may still think that their child has been injured or damaged by a vaccine, especially if they:

  • believe all of the vaccine injury stories they hear on the Internet
  • misuse vaccine package inserts
  • believe that VAERS reports have all been confirmed to be true
  • think that vaccine injuries can occur months or years after getting a vaccine
  • find a case report in PubMed and think that is convincing evidence of causality, even though it is really nothing more than a glorified anecdote
  • have found their way into a Facebook group where folks think vaccines always injure kids
  • go to a homeopath, chiropractor, or holistic practitioner who told them the child was injured

For example, studies have repeatedly shown that “vaccination does not increase the overall risk of sudden infant death (SIDS),” and that “the risk of SIDS in vaccinated cases and controls is neither increased nor reduced during the early post-vaccination period.”

What should you do if you really think that your child has a vaccine injury?
Just what a parent needs when their baby dies of SIDS, someone to reach out and tell them it was because they had him vaccinated… 

So a VAERS report of SIDS on the night that an infant received his 4 month vaccines, while tragic, would likely not end up being classified as a true vaccine injury.

Neither should a case report or package insert about SIDS influence your thinking about SIDS being associated with a vaccine injury.

Still, it is easy to understand why many like to blame vaccines.

Vaccines are an easy target, especially as most vaccine-preventable diseases are under fairly good control compared to the pre-vaccine era. And in some cases of SIDS, a new case of diabetes, or the sudden death of an older child, etc., it may happen soon after the child was vaccinated, and that correlation is hard to ignore for some folks.

At least it is hard to ignore and easy to be influenced by anti-vaccine folks if you don’t understand the background rate of these diseases – or the fact that a certain number of children will be affected no matter what, and because many kids get vaccinated, it is only a matter of chance that the two get correlated together. 

Vaccines are safe.

They don’t typically cause serious vaccine injuries.

If you do think that your child has a vaccine injury, talk to your pediatrician. Don’t get diagnosed in a Facebook forum…

More on Diagnosing Vaccine Injuries

A Shot at the Dark – DPT vs DTaP

Everyone knows that the DPT vaccine caused a lot of vaccine injuries, right?

“I got interested in the topic of vaccines way back in medical school. A friend of mine convinced me to read a book about vaccines, and it ended up being a very anti-vaccine book. It was all about an old vaccine called the DTP vaccine that we don’t use anymore. But the book talked a lot about the risks and the dangers of that vaccine. The author of that book was calling for that vaccine to no longer be used.

A number of years later, it turns out that they did discover that vaccine was causing a lot of very severe, life-threatening, even fatal side effects, so they did end up taking that vaccine off the market.

So it kind of opened my eyes to the fact that there are some very severe, fortunately very rare, side effects to vaccines, and I wanted to learn more about this issue. I started reading a lot more books.”

Bob Sears, MD on The Vaccine War

After all, it was after reports of those vaccine injuries, including seizures and encephalitis, that led to:

  • lawsuits and many pharmaceutical companies to stop making vaccines
  • the DPT: Vaccine Roulette special airing on TV
  • Barbara Loe Fisher, believing that her child was damaged by the DPT vaccine, forming the Dissatisfied Parents Together organization (she later changed the name to the National Vaccine Information Center), and writing the book DPT: A Shot in the Dark (this is the anti-vaccine book that Bob Sears is talking about above)
  • the National Vaccine Injury Compensation Act passing in 1986, creating the National Vaccine Injury Compensation Program and the Vaccine Court
  • the DTaP vaccine replacing the DTP vaccine

But were those reports true?

And did they ever really discover that the DPT “vaccine was causing a lot of very severe, life-threatening, even fatal side effects,” which led to them “taking that vaccine off the market” as Dr. Bob said?

A Shot at the Dark

It is easy to think that they were true, as we don’t use the DTP vaccine anymore.

But was it ever “taken off the market?”

“During the period of transition from use of whole-cell DTP to DTaP, whole-cell DTP is an acceptable alternative to DTaP for any of the five doses. For the first four doses, whole-cell DTP combined with Hib vaccine (DTP-Hib vaccine) is an acceptable alternative to DTaP and Hib vaccine administered at separate sites.”

ACIP on Pertussis Vaccination: Use of Acellular Pertussis Vaccines Among Infants and Young Children Recommendations of the Advisory Committee on Immunization Practices

No, it was replaced by a newer vaccine – DTaP.

And actually, it is still used in some parts of the world.

The whole-cell DTP vaccine did cause more side effects than the newer DTaP vaccine, but we are talking about relatively mild side effects, like local reactions, pain, and fever. And while that it is good, it comes at a cost, a less effective vaccine.

What about epilepsy and encephalitis?

After all of the scare about the DPT vaccine, studies quickly showed that it didn't cause all of the bad side effects that folks say it did.
After all of the scare about the DPT vaccine, studies quickly showed that it didn’t cause all of the bad side effects that folks say it did.

One clue that the DTP vaccine didn’t cause many of the problems that were blamed on it, is that the same vaccine lawsuits that were succeeding in driving vaccine manufacturers out of business in the United States, were failing in the UK.

“Where given effects, such as serious neurological disease or permanent brain damage, occur with or without pertussis vaccination, it is only possible to assess whether the vaccine is a cause, or more precisely a risk factor, when the background incidence of the disease is taken into account. The question therefore is, does the effect occur more often after pertussis vaccination than could be expected by chance?”

Justice Jeremy Stuart-Smith

There is also the fact that many children who were originally thought to have been vaccine injured after their DPT vaccine are now known to have Dravet syndrome.

Without a diagnosis, Cossolotto said, she would probably still believe — erroneously — that the DPT shot caused Michaela’s illness. “I understand this is a genetic condition,” she said. “Having an answer does make a difference.”

Medical mystery: Seizures strike baby after routine vaccine

And then there are the reports and studies that found:

  • no association with brain injury, epilepsy, SIDS, or infantile spasms
  • no increased risk for serious neurological illness in the week after getting vaccinated with DPT
  • no increased risk for encephalopathy in the 90 days after receiving DTP and MMR vaccines
  • no difference in severe reactions after DPT vs DTaP, including encephalopathy, seizures, and allergic reactions

So no, the DPT vaccine was never really as dangerous as folks said or thought it was, despite what you might read or hear in anti-vaccine books or news reports.

What to Know About the Safety of the DPT Vaccine

Misconceptions about the risks and safety of the DPT vaccine created the modern anti-vaccine movement and unfortunately, continues to influence many people.

More on the Safety of the DPT Vaccine

 

There Is a New Treatment for an Old Vaccine Induced Disease

Mutation screening of the SCN1A gene can help diagnosis kids and adults with Dravet syndrome.
Mutation screening of the SCN1A gene can help diagnosis kids and adults with Dravet syndrome.

Many children who once developed seizures after getting a pertussis containing vaccine were thought to have a vaccine injury.

In fact, HHE and seizures from DPT were once table injuries.

Since then, many of those children have been found to have Dravet syndrome, which is not a vaccine injury or vaccine induced disease. Dravet syndrome includes children who develop severe, fever-related seizures before their first birthday.

First described by Dr. Charlotte Dravet in 1978, using mutation screening of the SCN1A gene, in 2006, Dr. Samuel Berkovic found that many adults had Dravet syndrome too.

“We present here the cases of 5 children who presented for epilepsy care with presumed parental diagnoses of alleged vaccine encephalopathy caused by pertussis vaccinations in infancy. Their conditions were all rediagnosed years later, with the support of genetic testing, as Dravet syndrome.”

Reyes et al on Alleged cases of vaccine encephalopathy rediagnosed years later as Dravet syndrome

Others soon replicated Berkovic’s work and found other children with the SCN1A mutation that causes Dravet syndrome. These children had hard to control seizures, developmental delays, and autism-like characteristics and included some with an “alleged vaccine encephalopathy.”

That they didn’t have a vaccine injury wasn’t a surprise to many people, as many of the early reports about the DPT vaccine and seizures were wrong. In 1973, Dr. John Wilson took to the media to scare parents because he had “seen too many children in whom there has been a very close association between a severe illness, with fits, unconsciousness, often focal neurological signs, and inoculation.” What followed was a drop in DPT vaccinations in many countries and vaccine lawsuits, even though his study was later found to be seriously flawed, with most having no link to the DPT vaccine.

“Although Dravet syndrome is a rare genetic epilepsy syndrome, 2.5% of reported seizures following vaccinations in the first year of life in our cohort occurred in children with this disorder.”

Verbeek on Prevalence of SCN1A-Related Dravet Syndrome among Children Reported with Seizures following Vaccination: A Population-Based Ten-Year Cohort Study

What’s the association between Dravet syndrome and vaccines?

Since infants with Dravet syndrome have febrile seizures, any fever can trigger those seizures. Of course, vaccines can cause fever. And so infants with Dravet syndrome who get a fever after their vaccines can have seizures. Even without getting vaccines, they will eventually have seizures, so skipping or delaying vaccines isn’t a good idea for these kids.

There Is a New Treatment for an Old Vaccine Induced Disease

Have you ever heard of Dravet syndrome?

Even though Dravet syndrome is now known to be at least twice as common as once thought – at about 1 in 15,000 children, many parents have still never heard of it.

“Multiple prolonged febrile seizures in an otherwise well child, usually starting by 8 months of age, are the early clinical hallmarks of Dravet syndrome. Other typical features of this devastating disorder include refractory and multiple seizure types after 12 months of age, including partial, myoclonic, atonic, and absence seizures, and developmental delays and motor impairment such as ataxia and spasticity.”

Wu et al on the Incidence of Dravet Syndrome in a US Population

If you have been locked into the idea that your child was vaccine injured or vaccine damaged after the DPT vaccine, then you have likely not have heard of Dravet syndrome.

Without a diagnosis, Cossolotto said, she would probably still believe — erroneously — that the DPT shot caused Michaela’s illness. “I understand this is a genetic condition,” she said. “Having an answer does make a difference.”

Medical mystery: Seizures strike baby after routine vaccine

That’s unfortunate, as there is a new treatment for Dravet syndrome that is showing a lot of promise. Although not a cure by any means, use of cannabidiol (CBD) oral solution has been shown to reduce seizures in children with Dravet syndrome.

And no, getting a prescription for cannabidiol oral solution from a neurologist is not the same as buying CBD oil, hemp oil, or CBD hemp oil on the internet. While they are all free of THC, you have no idea of the real concentration of CBD when you buy these substances on the internet. Also, hemp oil doesn’t even contain CBD, so won’t control seizures or do much of anything else.

“Previously, many children with severe epilepsy and intellectual disability did not receive a specific diagnosis; there was only limited ability to take the diagnosis further. With advances in clinical epileptology, genetics, and neuroimaging, specific forms of severe epilepsy that lead to progressive intellectual deterioration can be identified.”

Samuel Berkovic, MD on Cannabinoids for Epilepsy — Real Data, at Last

How would you know if your child has Dravet syndrome? Mutation screening of the SCN1A gene, something that is now routinely done for infants with repeated febrile seizures.

Is mutation screening of the SCN1A gene to test for Dravet syndrome something your MAPS doctor would suggest for your older child?

What to Know About Getting Diagnosed and Treating Dravet Syndrome

Children with Dravet syndrome were once misdiagnosed as having a vaccine encephalopathy and may have some new hope in having resistant seizures treated with cannabidiol oral solution.

More on Getting Diagnosed and Treating Dravet Syndrome

 

Misdiagnosis of Kids with Autism and Vaccine Injury

Awareness of autism has greatly increased in recent years.

Some people are even suggesting that we have gotten to the point where autism is being over-diagnosed.

Remember when folks got upset because Seinfeld said that he might be on the autism spectrum?

Misdiagnosis of Kids with Autism and Vaccine Injury

Although autism might be over-diagnosed in some situations, it is just as likely to be under-diagnosed in others. That’s especially true when you hear about misdiagnosed autistic adults. No, not adults who were misdiagnosed with autism, but adults who are actually autistic, but were misdiagnosed with other conditions, like schizophrenia, anxiety, or personality disorders.

It is also probable that autism is actually sometimes misdiagnosed. That’s right, there are some other conditions that can be confused or misdiagnosed as autism.

“Generation Rescue believes that childhood neurological disorders such as autism, Asperger’s, ADHD/ADD, speech delay, sensory integration disorder, and many other developmental delays are all misdiagnoses for mercury poisoning.”

When Generation Rescue, Jenny McCarthy‘s autism organization, was founded, they believed that autism was caused by mercury poisoning. Actually, not just caused by, but that autism actually was a “misdiagnosis for mercury poisoning.”

No one really seems to believe that anymore, but there are some other conditions that can legitimately be misdiagnosed as autism.

Many people see Jenny McCarthy battling doctors to save or recover her son as being anti-autism.
Some people say that Jenny McCarthy’s son might have been misdiagnosed with autism and might actually have LKS instead.

Consider Landau-Kleffner syndrome (LKS), which is also known as Progressive Epileptic Aphasia or Aphasia with Convulsive Disorder. Children with LKS develop normally, but then have:

  • a severe regression in language functioning, with a progressive loss of speech, especially receptive speech or understanding what other people say
  • seizures, including focal motor seizures, focal seizures that become tonic-clonic seizures, atypical absence seizures, and atonic seizures.
  • behavioral problems, including having poor attention, being hyperactive and aggressive, and having anxiety

LKS can be difficult to diagnose because the seizures can be subclinical (only recognized on an EEG) at first, so the child may have already regressed by the time they have obvious seizures. And they might improve as the seizures are treated.

“After 35 years as a speech pathologist, I’ve seen many children with a diagnosis of autism that turned out to be a combination of language delay, sensory issues and apraxia.”

What If the Diagnosis of Autism Is Wrong?

Other conditions can have signs and symptoms that overlap with autism too (although they also sometimes occur with autism), making a misdiagnosis possible, including:

  • anxiety
  • childhood apraxia of speech – children with this motor speech disorder have a hard time talking
  • language delays
  • selective mutism – only affects children in some situations, like at school, but they talk well at home with close family
  • sensory issues
  • 22q11.2 deletion syndrome – a chromosomal disorder that causes many signs and symptoms, including some that resemble autism

But how can a child be misdiagnosed with autism?

“…inexperienced professionals, with narrow, preconceived notions of what ASD is, may place too much weight on symptoms that although associated with ASD, are not necessarily definitive of ASD. In other cases, and as noted above, problems in social relatedness and social interaction observed during the diagnostic process, may be artifacts of the unfamiliarity and artificiality of the setting itself.”

Barry M. Prizant On the Diagnosis and Misdiagnosis of Autism Spectrum Disorder

It shouldn’t be hard to imagine that a child could be misdiagnosed with autism, especially as there are more children with suspected autism, including children getting screened at an earlier age, meaning that there is a big demand for autism evaluations.

“Ideally, the definitive diagnosis of an ASD should be made by a team of child specialists with expertise in ASDs.”

AAP on the Identification and Evaluation of Children With Autism Spectrum Disorders

Unfortunately, that can mean that some of those evaluations are being done by health care providers without any added expertise in formally diagnosing autism, including some pediatricians, neurologists, counselors, and social workers, etc.

While many health care providers can evaluate and diagnose autism, from a child neurologist, developmental pediatrician, and child psychiatrist to a child psychologist, speech-language pathologist, pediatric occupational therapist, and social worker, they should all have expertise in autism spectrum disorders (ASDs).

Getting the Diagnosis Right

Why is it so important to get the diagnosis right?

Most importantly, a correct diagnosis means that a child will get the right treatment as early as possible. Also though, in an age when some parents still try to associate vaccines with autism, a misdiagnosis can be especially problematic, perhaps leading to a vaccine injury story.

Remember back in the 1970s when many parents blamed the DPT vaccine for causing their kids to have seizures and brain damage? We now know that some, if not many, of them had Dravet syndrome, a genetic condition (SCN1A mutation) in which children develop severe, fever-related seizures before their first birthday.

“We present here the cases of 5 children who presented for epilepsy care with presumed parental diagnoses of alleged vaccine encephalopathy caused by pertussis vaccinations in infancy. Their conditions were all rediagnosed years later, with the support of genetic testing, as Dravet syndrome.”

Reyes et al on Alleged cases of vaccine encephalopathy rediagnosed years later as Dravet syndrome

In addition to the seizures, these children have developmental delays and autism-like characteristics. They don’t have a “vaccine encephalopathy.” Just like autistic kids don’t have mercury poisoning or any kind of vaccine damage.

What to Know About the Misdiagnosis of Kids with Autism and Vaccine Injury

To help avoid a misdiagnosis, if possible, a team of child specialists with expertise in evaluating kids with autism spectrum disorders should see your child with suspected autism.

More on Misdiagnosis of Kids with Autism and Vaccine Injury

Vaccine Injury Stories That Scare Parents

It is not uncommon to hear about parents having ‘panic attacks’ over the idea of vaccinating their kids.

“…many parents are inundated with horror stories of vaccine dangers, all designed to eat away at them emotionally while the medical and scientific communities have mounted their characteristic response by sharing the facts, the data, and all of the reliable peer-reviewed and well-cited research to show that vaccines are safe and effective.”

Federman on Understanding Vaccines: A Public Imperative

Or simply becoming anxious over an upcoming appointment for routine immunizations or to get caught up on vaccines.

What’s fueling all of this anxiety?

Vaccine Injury Stories That Scare Parents

Some of it is likely from the vaccine injury stories that they read  or videos they watch.

As parents get better at spotting the myths and misinformation behind the anti-vaccine movement, we are seeing more and more vaccine injury stories pop up to scare them.

“…recognizes the importance of examples—testimonials and stories—that are the lifeblood of vaccine-hesitant beliefs.”

Nathan Rodriguez on Vaccine-Hesitant Justifications

Vaccine injury stories aren’t new though.

These types of anecdotal stories were very popular when folks used to think that the DPT vaccine was causing a lot of side effects. It wasn’t though. And it was soon proven that the DPT vaccine didn’t cause SIDS, encephalitis, non-febrile seizures, and many other things it was supposed to have caused.

“Anecdotes – about a new miracle cure, a drug that is not being made available on the NHS, or the side effects of treatment, or some environmental hazard – sell product. Data, on the other hand, which take us towards the truth about these things, are less popular. Anecdotes, however many times they are multiplied, do not point the way to reliable knowledge. As the aphorism says, “The plural of anecdote is not data”.”

Raymond Tallis on Anecdotes, data and the curse of the media case study.

That anecdotes “sell” better than data may be one reason why you see them so often on anti-vaccine websites. Another is that they simply don’t have any good data to use as evidence!

Are Vaccine Injury Stories True?

Vaccines are not 100% safe, so there is no doubt that some vaccine injury stories are true.

There is also no doubt that what many people perceive to be vaccine injuries have actually been proven to not be caused by vaccines, from allergies and eczema to autism and MS.

“In the absence of a specific etiology for ASDs, and a tendency among parents of children with a disability to feel a strong sense of guilt, it is not surprising that parents attempt to form their own explanations for the disorder in order to cope with the diagnosis.”

Mercer et al on Parental perspectives on the causes of an autism spectrum disorder in their children

Also keep in mind that in addition to the many so-called vaccine induced diseases, there are many historical vaccine injury stories that have been shown to be untrue:

  • the first deaf Miss America did not have a vaccine injury
  • Johnnie Kinnear supposedly began having seizures 7 hours after getting a DPT vaccine, when he was 14-months-old, but medical records actually shown that his seizures started 5 months after he received his vaccines
  • Dravet syndrome now explains many severe seizures associated with vaccinations

And at least one of Wakefield’s own followers – a mother who claimed that the MMR vaccine caused her son’s autism, was “dismissed as a manipulative liar” by a court in the UK.

Vaccine Injury Stories are Dangerous

Do vaccine injury stories have a purpose? They might help a parent cope with a diagnosis in the short term, but vaccine injury stories are dangerous in so many ways.

We have seen how they create anxiety for many parents, which can scare them away from vaccinating and protecting their kids from life-threatening vaccine-preventable diseases.

What else can they do?

Driving a wedge between parents and pediatricians does not help autistic kids.
Driving a wedge between parents and pediatricians does not help autistic kids.

They can certainly build up mistrust towards pediatricians and other health professionals. That is one way that the anti-vaccine movement continues to hurt autistic families. They also can lead parents to think that their “vaccine injured” child is “damaged” in some way.

And they push parents towards dangerous, unproven, unnecessary, and expensive alternative treatments. It shouldn’t be a surprise that many of the sites and forums that push vaccine injury stories also promote a lot of dangerous advice.

From recommending goat milk for your baby and skipping your baby’s vitamin K shot to various kinds of detoxing “treatments,” these are not the folks you want to trust with the health of your child.

What to Know About Vaccine Injury Stories

Vaccine injury stories prey on the fears of parents, help drive a wedge between them and their pediatricians, and are considered by many experts to be the lifeblood of the anti-vaccine movement.

More on Vaccine Injury Stories

Dravet Syndrome

Children with Dravet syndrome develop severe, fever-related seizures before their first birthday. In addition to other, hard to control seizures, children with Dravet syndrome typically have developmental delays and autism-like characteristics.

Dravet Syndrome

Dravet syndrome was first described by Dr. Charlotte Dravet in 1978.

Later, in 2006, Dr. Samuel Berkovic used mutation screening of the SCN1A gene and found that many adults had Dravet syndrome.

A 2011 case report, Alleged Cases of Vaccine Encephalopathy Rediagnosed Years Later as Dravet Syndrome, replicated Berkovic’s discovery.

“We present here the cases of 5 children who presented for epilepsy care with presumed parental diagnoses of alleged vaccine encephalopathy caused by pertussis vaccinations in infancy. Their conditions were all rediagnosed years later, with the support of genetic testing, as Dravet syndrome.”

Reyes et al on Alleged cases of vaccine encephalopathy rediagnosed years later as Dravet syndrome

In this new case report, researchers looked at “5 cases of alleged vaccine encephalopathy in which the parents of children with developmental delays and medically refractory epilepsy had strong suppositions that their child’s chronic encephalopathy was a result of pertussis immunization received in infancy.”

They include a:

  • 14-year-old mentally retarded boy with autistic features, who was a healthy infant until he got his vaccines when he was 7 months old
  • 20-year-old with delayed development and autistic-like features who began having seizures right after getting vaccines at 2 months
  • 2-year-old with a mild expressive speech delay who developed seizures after getting vaccines at age 4 months
  • 4-year-old with “slowing development” who began having seizures after the six month vaccines
  • 3-year-old regressed development and autistic-like features who began having seizures after getting vaccines at age 4 months
 Genetic testing eventually led to a diagnosis of Dravet syndrome for all five children.

Vaccine Encephalopathy Rediagnosed as Dravet Syndrome

Many children who were once thought to have vaccine injuries, developing seizures after getting the DPT vaccine, have now been found to have Dravet syndrome instead.

Dravet syndrome is a genetic condition.

It is important to note that vaccines don’t cause Dravet syndrome. They don’t cause the genetic mutation that causes Dravet syndrome.

Still, because vaccines can cause fever, getting immunized “might trigger earlier onset of Dravet syndrome in children who, because of an SCN1A mutation, are destined to develop the disease.”

Since fever is the usual trigger of the first seizure and subsequent seizures, it is important that children with Dravet syndrome get all of their vaccines, since natural infections will cause more fever and put them at risk for more seizures.

In another study, A retrospective study of the relation between vaccination and occurrence of seizures in Dravet syndrome, only 16% of patients with Dravet syndrome had a vaccine related seizure as their first manifestation.

The researchers also state “that although vaccination might trigger an earlier onset of the presenting symptoms of Dravet syndrome, there is no evidence that the outcomes, in terms of subsequent seizure types or intellect, are any different between those patients with Dravet syndrome whose symptoms started within 2 days of vaccination and those whose symptom onset was not related temporally to vaccination.”

They suggest testing (SCN1A genetic testing) for patients “with a clinical course suggestive of Dravet syndrome, especially in the context of an onset of symptoms after vaccination, with or without fever.”

Their conclusion is that Dravet syndrome “offers an alternative genetic explanation to refute alleged cases of vaccine encephalopathy.”

This isn’t all about Dravet syndrome though.

As Dr. Max Wizniter says in his commentary “Dravet syndrome and vaccination: when science prevails over speculation,” the “temporal association between a vaccination and infancy-onset epilepsy does not imply causation.”

What has been found out about Dravet syndrome should help parents understand that the same idea applies to the false beliefs that try to associate vaccine side effects with other conditions and which are leading to lower immunization levels.

What to Know About Dravet Syndrome

Dravet syndrome is a genetic condition that has been found to be the cause for many kids developing seizures and developmental problems after their vaccines.

More Information About Dravet Syndrome