Many families have asked us recently whether their children ages 16+ with NBIA should be vaccinated for COVID-19. Since the available vaccines have not yet been approved for kids under 16, it will not yet be a question for many of you. However, others with NBIA have already been offered vaccination or will be in the near future.

The NBIAcure group has always supported vaccination for those with NBIA, including a regular pediatric vaccination schedule and annual flu shots. While vaccination has never been studied specifically in NBIA, the information we have available and our decades of experience with these disorders suggest that the benefit of COVID-19 vaccination will far outweigh potential risks. Some parents have specifically voiced concerns about their children who have seizures. If your loved one with NBIA has seizures or an increased risk for seizures, then mindfulness around potential fever is warranted. Mild fever, as well as headache and general achiness, is more likely after the second dose of vaccine, but can also happen after the first. These symptoms are an expected reaction to the vaccine, and are considered a good sign that the immune system is responding normally. Recommendations regarding pre-medication with a fever-reducing medication like acetaminophen (Tylenol, paracetamol) vary, but because of increased risk of seizures with fever, we encourage you to discuss this with your loved one’s healthcare provider. All the vaccines approved for use at the time of writing are a two-dose series. Although side effects are more common after the second dose, it is very important to follow through with the second dose as your loved one will not be fully protected without it.

Our team has enthusiastically welcomed the advent of vaccination and feels it’s a huge step forward in our journey of the past 10 months. As a side note, the fact that the vaccines are based on basic tenets of genetics has been particularly exciting! While they are new, mRNA vaccines promise to be highly effective and will likely continue to be used in the future. They leverage the machinery our cells already have to read genetic messages and build proteins. In the case of the vaccine, a new instruction or “recipe” is provided and our cells are able to do the rest. These vaccines do not change the natural genetic material already within our cells and they do not cause COVID-19 infection. We hope this message offers the community some hope and reassurance. We look forward to being able to see you in person in the future.