Vaccines recommended in Dravet, but managing fever risk is key
Study finds need for standardized guidelines supported by clinical evidence
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People with Dravet syndrome should receive all routine vaccinations recommended for their age, but careful strategies are needed to reduce the risk of fever-related seizures, a study reported.
The researchers suggested practical approaches to manage fever in Dravet patients, but noted that further studies are needed to develop guidelines that are supported by solid scientific evidence. They said their study “aims to highlight the urgent need for standardised, evidence-based fever and vaccination management protocols.”
The study, “Managing Fever and Vaccination Risks in Dravet Syndrome: From Pathophysiology to Clinical Practice,” was published in the Journal of Child Neurology.
Dravet syndrome is a rare genetic disorder marked by frequent and often prolonged seizures that usually begin in infancy. Elevations in body temperature are a known trigger for seizures in people with Dravet, and families must take care to avoid anything that may increase body temperature, such as hot baths or intense exercise, in addition to fevers.
Dravet is caused in most cases by mutations in the gene that encodes NaV1.1, a sodium channel that helps regulate electrical signaling in the brain. When this channel does not work properly, it can lead to excessive neuronal activity and seizures. Temperature changes may further impair its function, helping explain why fever is a potent trigger in Dravet.
Vaccine misinformation
Vaccines work by stimulating the immune system to recognize infectious virus or bacteria as a threat. This trains the immune system to mount a highly effective defense if it encounters the actual infection, thus substantially reducing the risk of serious diseases.
For most of the population, recommended vaccines are highly effective and have minimal safety risks. But because vaccines work by activating the immune system, they can cause fevers that trigger seizures in Dravet patients.
Children with undiagnosed Dravet sometimes experience their first seizure in relation to a vaccine. Paired with widespread misinformation about vaccines, this has led to a myth that vaccines can cause Dravet syndrome.
The researchers stressed that this is definitively not the case: Vaccines may trigger a first seizure, but the underlying mutation was already there, so the child would have experienced seizures and other Dravet symptoms at some point. Long-term outcomes for kids with Dravet whose first seizure is triggered by a vaccine are not different from outcomes for other people with the condition.
Experts consistently recommend that people with Dravet receive all routine vaccines despite the risk of fever. The logic is simple: While vaccines can trigger fever, the infections they prevent also can cause fever, often more severe, along with potentially serious complications.
“Withholding vaccinations is not recommended, as the risks associated with vaccine-preventable infectious diseases (and the high-grade fevers that accompany them) are considered significantly greater than the risk of a vaccine-triggered seizure,” the researchers wrote.
Although vaccines are strongly recommended, it’s important to take proactive steps to minimize the risk of fever when Dravet patients get their vaccines. This most commonly involves taking anti-fever medicines like ibuprofen and acetaminophen prior to getting vaccines. Some experts have also argued for the use or preventive anti-seizure meds in high-risk cases, but the researchers said that “this practice is not universally standardized.”
In addition to prevention strategies around vaccines, the researchers outlined several strategies to reduce and manage fever around illness. These include the same anti-fever medications recommended before vaccines, as well as non-drug approaches such as monitoring temperature closely, removing excess clothing layers, using physical cooling methods, and maintaining adequate hydration.
The researchers said there’s an urgent need for more studies to determine the most effective strategies for preventing vaccine-related seizures in Dravet patients and optimal fever management strategies. This research could be used to develop guidelines to help patients to be protected from dangerous infections while minimizing the risk of seizures, they said.
“Future research should prioritize multicenter, prospective studies to establish standardized, evidence-based fever management and prevention protocols in” Dravet syndrome, the researchers concluded. “Given the major impact of fever-related seizures on morbidity, hospitalization rates, and quality of life, establishing evidence-based guidelines is an urgent clinical and research priority.”
