Published March 24, 2020

Edited April 18, 2020

A Message To Our Community

We are grateful for our small but mighty community;  your health and wellbeing is our number one priority. This includes not only the parents, children, and adults who had epilepsy surgery in childhood, but also our staff, volunteers, donors, and the team of clinicians and researchers who have provided us with guidance since our inception.

COVID-19 is on everyone’s minds, and we are committed to sharing ongoing information, updates, and answers to key questions. With our advocacy partners the Epilepsy Foundation, the Child Neurology Society, and DEE-P Connections, we will be closely monitoring COVID-19 and will update this website with relevant information as best as possible.

This page, and all information on our website, including comments from experts, are informational only and do not constitute medical opinion or advice. You should contact your child’s neurologist or neurosurgeon if you have any questions about COVID19 and your child.

Because information about COVID-19 is changing at a rapid pace, this page may not contain the most updated information. For the most current information on COVID19, we recommend the following websites:

  • People aged 65 years and older
  • People who live in a nursing home or long-term care facility
  • Other high-risk conditions could include:
    • People with chronic lung disease or moderate to severe asthma
    • People who have heart disease with complications
    • People who are immunocompromised including including cancer treatment, bone marrow or organ transplantation, immune deficiencies, poorly controlled HIV or AIDS, and prolonged use of corticosteroids and other immune weakening medications
    • People of any age with severe obesity (body mass index [(BM]I)≥40) or certain underlying medical conditions, particularly if not well controlled, such as those with diabetes, renal failure, or liver disease might also be at risk
  • People who are pregnant should be monitored since they are known to be at risk with severe viral illness, however, to date data on COVID-19 has not shown increased risk

After conducting a quick online survey, we collected a very long list of questions from our community about COVID-19 concerns. We then aligned with the Epilepsy Foundation, the Child Neurology Society, our partners at DEE-P Connections, as well as leading experts to have them answered. General epilepsy, drug availability, and high risk questions are answered on those websites linked in the content boxes below.

Although we have provided you with highlights, you should first start at those sites and webinars for your information. Most of your questions are answered there.  

  • Epilepsy, whether active or controlled, does not increase the risk of getting COVID-19
  • Epilepsy, whether active or controlled, does not increase the severity of COVID-19;
  • A symptom of COVID-19 is fever, which can increase seizure activity;
  • Preliminary information from countries where outbreaks have occurred suggests that the risk of worsening seizures with COVID-19 appears to be low for most people with epilepsy;
  • Physicians in Italy have reported no significant changes in seizure activity in children with epilepsy;
  • Most children who contract COVID-19 exhibit only mild symptoms;
  • Children who take steroids or other medications which lower their immune system response, may be at an increased risk for more significant symptoms;
  • Children with lung disease may be at higher risk for more significant symptoms.

On April 6, 2020, the American Epilepsy Society issued new guidance about seizures and COVID-19. Highlights include:

  • Early evidence on COVID-19 shows neurological complications are most associated with severe cases;
  • Seizures and epilepsy do not appear to be a predisposing factor for COVID-19;
  • Because COVID-19 is either rare or extremely mild in patients under age 15, pediatric patients are likely at relatively decreased risk of seizures due to COVID-19;
  • There is no objective evidence that seizures are worsened in COVID-19 patients; however, because seizures tend to increase when children with epilepsy are sick, seizures should be a major concern with severe COVID-19 infections.
  •  All caregivers of patients with epilepsy should take extra care to assist their patients in preventing potential COVID-19 infection.

We are working behind the scenes for you alongside our advocacy partners to make sure our community’s voice is heard in key legislation. We have signed on to the following both individually and as members of the Epilepsy Leadership Council:

  • Medication Access in Third COVID Package Letter: A letter led by the Epilepsy Foundation urging Congress to include provisions in the COVID-19 packages that will ensure access to medications and supplies, including requiring all payers to relax refill limits so that people can have up to a 90-day supply; ensuring that the protections are extended to certain controlled substances including anti-seizure medications; and requiring all payers to waive prior authorization and other utilization management practices. (Download here.)
  • Every Life Foundation Patient Community COVID Access Letter: A letter led by the EveryLife Foundation which is very similar to the Foundation’s letter and focused on medications, though directed at state-level decision makers and entities;
  • Defense Health Research Consortium (DHRC): Federal appropriations for Fiscal Year (FY) 2021 outside of the COVID-19 relief package. The letter will be sent to the House and Senate Appropriations Committees, expressing support for increased funding for the Defense Health Research Programs, or Congressionally-Directed Medical Research Programs (CDMRP), at the Department of Defense. The CDMRPs fund cutting-edge research into a number of epilepsy-related issues including post-traumatic epilepsy (PTE) resulting from traumatic brain injury (TBI) and the tuberous sclerosis complex (TSC).

On April 6th, we participated in group call along with the American Association for People with Disabilities, the Arc, the National Council on Independent Living, the Partnership for Inclusive Disaster Strategies, and other organizations to discuss congressional funding for home and community based services, paid family medical leave, and access to personal protective equipment, medications and supplies for families with disabilities in the next COVID relief package.

We know many of the families we serve may be impacted financially by the COVID-19 pandemic. If you are in immediate and significant financial distress, you may qualify for our new, one-time $250 micro grant. Our profound gratitude to the Dreams for Danny Surgical Evaluation Travel Scholarship peer review panel for their help drafting this policy with us. Learn more at Covid-19 Emergency Assistance Fund.

Covid-19 and Pediatric Epilepsy Surgery

The phrase “epilepsy surgery” describes many different types of surgical procedures which remove, disconnect, stimulate, or destroy part of the brain. When considering the questions below, keep in mind your child’s unique outcomes and challenges.

If  you submitted a question and it is not addressed below, it means we are still working on finding expert commentary to address it. These questions serve as guidance only – you should always contact your child’s neurologist or neurosurgeon if you have specific questions about your child.

Yes, that is possible. On March 13, 2020, the American College of Surgeons recommended that hospitals, health systems and surgeons minimize, postpone, or cancel elective operations. Epilepsy surgery is generally considered to be an elective procedure (meaning it can be scheduled in advance) unless the surgical team decides it is urgent. You should remain in regular contact with your child’s neurologist and neurosurgeon about upcoming surgery. Your child’s surgeon may reschedule surgery if precautionary measures at the hospital are instituted or as part of the hospital’s emergency preparedness plan, unless the surgery is deemed urgent. 

There is no evidence that any epilepsy surgery affects the immune system in the long run. Immunity may be lower during surgery because of the effects of anesthesia on the body, or right after surgery if corticosteroids are given to reduce brain inflammation.

Source: Dr. Gary Mathern, Co-Director of the Pediatric Epilepsy Surgery Program, Professor, Departments of Neurosurgery and Psychiatry & BioBehavioral Medicine, and Dr. Alfonsina Q. Davies Endowed Chair in Epilepsy Research at UCLA.

Rasmussen’s encephalitis is an extremely rare neurological disorder. The cause of Rasmussen’s encephalitis is still unknown, but some research shows it may be caused in part by the body’s own T cells that wrongly attack cells in the brain – an over-active T-cell response. For this reason, some doctors give drugs that suppress the immune system in the early stages of Rasmussen’s encephalitis in an attempt to slow down its progression.

At this time, we know of no evidence to show that persons with a history of an over-active T-cell response, such as suspected in Rasmussen’s encephalitis, are more susceptible to COVID19.

Whether a child with a history of Rasmussen’s encephalitis is at greater risk of more severe symptoms of COVID-19 depends on two factors: 1) whether the child is currently on a drug that affects the immune system (such as steroids or other drugs) and (2) whether the child has Rasmussen’s syndrome as well as some type of immunodeficiency. If the answer to both questions is “no” then standard precautions for a child with epilepsy, and any related co-existing conditions if present, should apply.

Sources:

Our deepest gratitude to Dr. Adam Hartman, Program Director in the Division of Clinical Research at the National Institute of Neurological Disorders and Stroke and Director of the Johns Hopkins Center for Pediatric Rasmussen Syndrome and Dr. Gary Mathern, Scientific Coordinator of the Rasmussen’s Encephalitis (RE) BRI Affinity Group at the Brain Research Institute, UCLA, for their assistance with this content.

Children or adults who had hemispherectomy surgery are not at higher risk of getting COVID-19.

Generally, hemispherectomy surgery should not increase the severity of COVID-19; however, children and adults who also have cognitive challenges may be at higher risk. Here’s why:

Children or adults with hemiparesis, which occurs after hemispherectomy surgery (and sometimes before), may have weakened respiratory muscles –  the diaphragm and the intercostal muscles that are in between the ribs. In everyday life, this is not a noticeable problem because normal breathing requires very little effort. Even a person with muscle weakness can breathe normally.

If the lungs become infected, such as in cases of severe pneumonia or severe COVID-19, taking deep breaths helps move around the mucus in the lungs and clear the windpipes. A person with weak respiratory muscles due to hemiparesis may have to work harder to take deep breaths. If a child or adult also has cognitive challenges, he/she may not understand how to intentionally take deep breaths on command. This may increase the likelihood of severe symptoms of COVID-19.

Also, children or adults with cognitive challenges may not be able to generate a strong cough on command. This may cause them to have to retain mucus that may clog up the windpipes in the lungs.

Children or adults who have developed swallowing problems before or after surgery will be more prone to choking and aspirating during a severe or intense illness. All these factors can complicate even minor infections and would complicate symptoms of COVID-19.

There is some silver lining here: doctors in other countries affected by COVID-19 report that children, including those with serious underlying health problems, have been affected significantly less (both in numbers and severity) than older healthy adults. Using the precautions recommended for everybody (such as frequent hand-washing, avoiding close contact, etc.) this trend will hopefully continue.

Our profound gratitude to Dr. Anastassios C. Koubourlis, M.D., M.P.H., Chief, Division of Pulmonary & Sleep Medicine and Director of the Cystic  Fibrosis Center at Children’s National Medical Center for assisting with this content.

Information from our advocacy partners

Information about COVID-19 and epilepsy, co-occurring conditions, drug availability, and other important facts. Start here.

Other helpful information.