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IFCR has continued to receive updates from our COE network directors regarding COVID-19. Dr. Tim Benke has shared a few of his COVID concerns with us, and we want to share his recent advice with not only our CDD families but also with the developmental epileptic encephalopathy (DEE) communities. This communication is intended to help you consider the safety and risks of any environments that you might need, or desire to visit as regions move to safer at home protocols.

In general, our loved ones might not do well with COVID19. And should they become really sick, they could need ICU care that might include a ventilator with the probability of being treated by providers not familiar with their rare disease who may make unsupported assumptions about their disease, including life expectancy and quality of life.

The goal is to keep them from getting sick, if at all possible. Consider gauging the risk of your loved one in comparison to these influenza risk issues:

Together, parents and providers weigh these risks when considering these scenarios:

Most health care facilities will have necessary safeguards in place for COVID-19 (screening team members, rapid testing, personal protective equipment), making them as safe as possible. This is important, as we do not want families to avoid healthcare when necessary, especially with possible treatable illnesses or even pneumonia from other causes (such as aspiration). School and therapy situations will vary and should be forthcoming with their safeguards so you can make decisions about when it is appropriate to resume in-person services.

In COVID-19 days, physicians should not recommend in-person doctor visits (unless urgent—see above, and do telehealth instead) or in-person clinical trial visits until we know that a standard treatment environment can be assured. The timing for this environment might be past the “second peak” after phased re-opening. After that point, parents will primarily weigh the risk of these activities, and it will be community dependent. Families and providers will each be weighing their situations and risk tolerance.

Until then, we encourage you to work with your providers to support your loved one to the fullest extent possible.


With the recent news about COVID-19 in our communities, we know there is concern. The situation is changing day-to-day; staying up-to-date is the best remedy. Resources to do so include the CDC website, your local Children’s Hospital, and your primary care provider. Please do not assume that clinic visits or clinical trial visits are canceled unless your medical provider notifies you. Both of these are considered medically necessary; contact your provider with any questions or concerns.

Here are informative links to the CDC which are updated regularly:
CDC: https://www.cdc.gov/coronavirus/2019-ncov/index.html
Their FAQs regarding prevention and treatment:
https://www.cdc.gov/coronavirus/2019-ncov/about/prevention-treatment.html

Other suggestions related to our patients and caregivers:

  1. Wash your hands and patient’s hands several times daily
  2. Do not touch your face
  3. Ill caregivers should reduce or eliminate contact and self-isolate per CDC guidelines
  4. Wash surfaces, toys, devices and other items that are in contact with patients hands with disinfecting wipes several times daily
  5. Caregivers that touch items and surfaces that are in contact with patients hands should wash hands immediately before and after touching these surfaces; this includes wheelchairs
  6. School and therapy should continue unless in a highly endemic area where schools are closed, per CDC guidelines
  7. Mask guidelines: see CDC website: https://www.cdc.gov/coronavirus/2019-ncov/about/prevention-treatment.html
  8. Follow CDC guidelines about monitoring signs and symptoms of illness: https://www.cdc.gov/coronavirus/2019-ncov/about/steps-when-sick.html
  9. Make sure you have up-to-date prescriptions with refills.

The Epilepsy Foundation also has some helpful tips, including creating an emergency supply of prescription medicines at this link: https://www.epilepsy.com/article/2020/3/concerns-abocoronavirus

We are here to help and will continue to monitor and provide timely updates that are specific to our community.