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

 

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