Anti-vaccine folks have parents worried about everything and anything having to do with vaccines these days.
Unlike most of the ideas that anti-vaxxers push, febrile seizures really can occur after vaccines. Fortunately, they aren’t something to be worried about.
Should Parents Be Concerned About Combination Vaccines and Febrile Seizures?
While febrile seizures can be scary, it is important to know that without other risk factors, kids who develop febrile seizures after a vaccine are at the same small risk for developing epilepsy as other kids.
And know that vaccines aren’t the only cause of febrile seizures. Vaccine-preventable diseases can cause both febrile seizures and more serious non-febrile seizures.
“Studies have shown a small increased risk for febrile seizures during the 5 to 12 days after a child has received their first vaccination with the measles, mumps, rubella (MMR) vaccine. The risk is slightly higher with the measles, mumps, rubella, varicella (MMRV) combination vaccine, but the risk is still small. Studies have not shown an increased risk for febrile seizures after the separate varicella (chickenpox) vaccine.”
Childhood Vaccines and Febrile Seizures
The small extra risk of febrile seizures for the measles, mumps, rubella, varicella (MMRV) combination vaccine vs the separate MMR and chicken pox vaccines is just for the first dose of these vaccines, so pediatricians and parents might choose to give the separate vaccines instead. And only use this combination vaccine for the second dose.
Are any other combination vaccines a concern for febrile seizures?
Nope, even though some anti-vaccine sites push that idea and that vaccines can cause epilepsy.
Parents will likely be reassured by one of the studies that anti-vaccine folks like to cite, which states that “vaccination with DTaP-IPV-Hib was not associated with an increased risk of epilepsy.”
We do know that there is a small increased risk for febrile seizures when the influenza vaccine is given at the same time as either the Prevnar13 vaccine or the DTaP vaccine, although “the risk of febrile seizure with any combination of these vaccines is small and CDC’s Advisory Committee on Immunization Practices (ACIP) does not recommend getting any of these vaccines on separate days.”
Is the risk really small though?
After all, an article by Sheri A Marino talks about a 6-fold extra risk in some cases.
Isn’t that a lot?
“Does this mean we should stop giving these vaccines together or stop giving them at all? We say, emphatically, no. With the results of this study, we can accurately calculate the risks and benefits of this practice. The risk is 1 febrile seizure per pediatric practice every 5 to 10 years. Febrile seizures, although frightening to parents, rarely have any long-term sequelae. The benefits of giving these vaccines simultaneously include decreased office visits associated with painful vaccines, decreased episodes of vaccine-associated fussiness, and, most important, the assurance that children will be fully immunized and protected from infections that carry real morbidity and mortality. It is well established that the vaccines we miss when we fail to give all the vaccines we can (simultaneously at each health care visit) may never be administered to some children, thus leaving them at risk for the diseases the vaccines prevent. It goes without saying that influenza, diphtheria, tetanus, pertussis, and pneumococcal infections may result in serious illness. These infections also have the potential to cause fevers and febrile seizures. Without vaccines to prevent these illnesses, pediatricians would see many more than 1 case of most of these infections each decade. In fact, they would see children in their practices with both febrile seizures and life-threatening infections. The risk from these diseases far outweighs the risk from the vaccines.”
Sawyer et al on Vaccines and Febrile Seizures: Quantifying the Risk
Because the risk of febrile seizures is so small, it remains small even with any extra risk.
What’s more concerning? The risks of following anti-vaccine propaganda and leaving your kids unvaccinated and unprotected.
So you likely know that there were a bunch of lawsuits against manufacturers of the DPT vaccine in the early and mid 1980s.
“As the number of lawsuits grew to hundreds during the early 1980s, the pharmaceutical companies making vaccines saw their liability insurance bills soar. Worried not only about multimillion-dollar settlements, but also even the legal costs of defending themselves successfully, several companies simply stopped making vaccine.”
How a Media Scare On Vaccine Started a ‘near-Epidemic’
That’s why the National Vaccine Injury Compensation Act passed in 1986, creating the National Vaccine Injury Compensation Program and the Vaccine Court.
About Those Lawsuits That Almost Put Vaccine Manufacturers out of Business
But did those DPT vaccine lawsuits prove that vaccines aren’t safe?
Is that why vaccine manufacturers needed help to limit their liability?
“The total amount claimed in 1984 DTP vaccine suits ($1.3 billion) is more than 20 times the total value of 1984 sales of DTP vaccine at the market price of $2.80 per dose.”
Hinman on DTP Vaccine Litigation
Of course not!
While the older DPT vaccine did cause more local reactions, pain, and fever than the newer DTaP vaccine that replaced it, all of the serious reactions that triggered the lawsuits were later found to not be caused by the vaccine.
That’s not surprising, as the same vaccine lawsuits that were succeeding in driving vaccine manufacturers out of business in the United States were failing in the UK and Canada!
This included the Loveday judgment in Great Britain’s High Court of Justice, Queen’s Bench Division and the Rothwell judgment in the Supreme Court of Ontario, Canada, both decided in 1988, with justices ruling that there was “insufficient evidence to demonstrate that pertussis vaccine can cause permanent brain damage in children.”
Similar cases were succeeding in the US though..
“The number (and dollar value) of suits increased in 1982, a year when broadcast and print media began to devote considerable attention to the alleged hazards associated with the use of pertussis-containing vaccines. Most of the media coverage has emphasized alleged risks of pertussis vaccines and has given relatively little attention to the benefits of their use.”
Hinman on DTP Vaccine Litigation
Most experts knew that most of the lawsuits were frivolous, but they weren’t able to stop the damage that was to come, as:
Barbara Loe Fisher, believing that her child was damaged by the DPT vaccine, formed the Dissatisfied Parents Together organization and wrote the book DPT: A Shot in the Dark, which later influenced Bob Sears
there were temporary shortages of DTP vaccine in 1984, as “two of the three American manufacturers of the product decided to halt or restrict its sales.”
What else happened? I mean besides all of the studies proving the DPT vaccine was safe?
Parents who had been scared by the DPT controversy were ready and primed when Andy Wakefield showed up and told them that they had something new to worry about – the MMR vaccine and autism.
And of course, pertussis is now returning, as more parents are scared to vaccinate their kids and the newer DTaP vaccine isn’t as effective as DPT.
More on Those Lawsuits That Almost Put Vaccine Manufacturers out of Business
Wait, why would anyone think that getting vaccinated would make you more likely to get a vaccine-preventable disease?
Because there is a new pertussis outbreak in California and folks don’t understand how attack rates work…
Does Getting the DTaP Vaccine Make You More Susceptible to Pertussis?
We know that the latest pertussis vaccines aren’t the greatest, having issues with waning immunity.
They don’t actually make you more likely to get pertussis though, at least not relative to being unvaccinated.
“Because of linked-epitope suppression, all children who were primed by DTaP vaccines will be more susceptible to pertussis throughout their lifetimes, and there is no easy way to decrease this increased lifetime susceptibility.”
JD Cherry on The 112-Year Odyssey of Pertussis and Pertussis Vaccines-Mistakes Made and Implications for the Future
What the above quote that anti-vaccine folks are misusing is actually saying is that kids who got DTaP vaccines will be more susceptible to pertussis compared to those who got DTwP, the older version of the vaccine. That’s what the whole article is about!
It is not that they will be more suspecptible to pertussis vs someone who was unvaccinated.
Dr. I: Anti-vax folks are misinterpreting that statement, not understanding that it means relative to kids who got DTwP. They think that you are saying that it is the DTaP vaccine itself that makes it more likely that a child will get pertussis, in general. Even relative to someone who is unvaccinated. I know it shouldn’t be necessary, but can you provide a simple quote to clarify this?
JDC: You are of course correct. I was asked to write-up the talk that I have given many times in the US and in many other countries. In the talk, right at the beginning, I mention that today there is 20 fold less pertussis than there was in the pre-vaccine era and that illness in vaccine failures is much less severe that illness in unvaccinated children. I also remember how wrong they were 30 years ago R/E alleged reactions to DTwP.
And if you read his latest article, The 112-Year Odyssey of Pertussis and Pertussis Vaccines-Mistakes Made and Implications for the Future, especially if you read more than the abstract, you discover that’s what he is saying.
But what about linked-epitope suppression?
In “linked-epitope suppression,” memory B cells out-compete naive B cells for access to the Bordetella epitopes because they are more numerous and their receptors exhibit a higher antigen affinity. Linked-epitope suppression applies as the immune response to novel epitopes is suppressed by the strong response to initial components if they are introduced together.
JD Cherry on The 112-Year Odyssey of Pertussis and Pertussis Vaccines-Mistakes Made and Implications for the Future
Basically, the DTwP vaccine included many more epitopes or targets for antibodies to bind to than the newer DTaP vaccine. That’s why it worked better. And you don’t get a good response to non-vaccine epitopes or antigens.
Still, you at least have some memory B cells and antibodies after getting the DTaP vaccine, which is why the idea that getting vaccinated makes you more susceptible to pertussis is silly. You are still protected, even if the protection isn’t perfect.
That’s why Dr. Cherry recommends that folks continue to get vaccinated and protected!
“We should be more vigilant than we have been in the past to recognize and treat pertussis in all age groups so that transmission to young infants is reduced. Most important (although not discussed in this review) is to ensure that all pregnant women receive the Tdap vaccine between 27 and 36 weeks’ gestation with each pregnancy. Also, we should consider routinely administering Tdap vaccine every 3 years to all adolescents and adults who were primed with a DTaP vaccine. This suggestion is contrary to that in the current Advisory Committee on Immunization Practices recommendations. However, from the data available, this approach could be expected to decrease the circulation of B pertussis in adolescents and adults. Also, Tdap should be administered to all adolescent and adults exposed to B pertussis during a school or other group outbreak.”
JD Cherry on The 112-Year Odyssey of Pertussis and Pertussis Vaccines-Mistakes Made and Implications for the Future
He does recommend that we work on new pertussis vaccines though.
“Future cohorts would benefit from the development and use of live vaccines and less-reactogenic DTwP vaccines.”
JD Cherry on The 112-Year Odyssey of Pertussis and Pertussis Vaccines-Mistakes Made and Implications for the Future
But why are we using a vaccine that doesn’t work as well as the previous vaccine we had?
“Despite the fact that in all but 2 of the efficacy trials the DTwP vaccines had greater efficacy than did the DTaP vaccines being studied, DTaP vaccines were licensed and used in many countries throughout the world; DTaP vaccines had replaced DTwP vaccines. The urgency to adopt DTaP vaccines was driven largely by antivaccine activist groups such as “Dissatisfied Parents Together.” During the rush to adopt DTaP vaccines and tetanus, diphtheria, acellular pertussis vaccines for adults (Tdap), much of the history relating to human pertussis was overlooked.”
JD Cherry on The 112-Year Odyssey of Pertussis and Pertussis Vaccines-Mistakes Made and Implications for the Future
“The results of a number of controlled studies between 1979 and 2004 indicated that no risk of severe neurologic disease after DTwP vaccinations existed. It was noted by myself and Shields (a pediatric neurologist) that what was being called pertussis vaccine encephalopathy was not an encephalitis-like event but, instead, the first seizure or seizures of infantile epilepsy.”
JD Cherry on The 112-Year Odyssey of Pertussis and Pertussis Vaccines-Mistakes Made and Implications for the Future
No, the cases of encephalopathy that were being reported were not caused by the DTwP vaccine. And neither did the DTwP vaccine cause SIDS, as was also reported at the time.
“Since 1997, the DTaP vaccination policy has created a cohort of people (the number of which is expanding yearly) who are more susceptible to repeated clinical illness with B pertussis infection than are DTwP-vaccinated children. There is no feasible way to make this cohort less susceptible.”
JD Cherry on The 112-Year Odyssey of Pertussis and Pertussis Vaccines-Mistakes Made and Implications for the Future
And now, after helping create the current DTaP vaccination policy, anti-vaccine folks want to scare folks away from using the vaccine. Don’t let them. Don’t skip or delay this vaccine and leave your kids susceptible to getting diphtheria, tetanus, and pertussis.
More on Does Getting the DTaP Vaccine Make You More Susceptible to Pertussis?
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.
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.
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 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.
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.”
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.
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:
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?
“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.
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.
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
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.
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
