FAQs – Coronavirus

On March 24, 2020, Doctors Bruce Cohen, Fran Kendall, Sumit Parikh and Amy Goldstein conducted a webcast for patient families and caregivers about the impact of the coronavirus.  Below are top five questions asked by our patient family community.

Q. Are patients with severe symptoms of mitochondrial disease more susceptible to the COVID-19 virus than patients with milder symptoms?

A. Immunocompromised patients, meaning they have low immune globulin, are particularly at risk.  The second component of susceptibility is the degree of broad system problems.  Certain people are going to be more at risk for developing the severity of the disease, for example, those that may have respiratory compromise and those who have restrictive airway disease with muscle weakness. These patients don’t breathe as well as other people and are more at risk, along with those whose hydration status is always borderline or those who are tube fed or TPN dependent.  As a general rule, the more widespread and complex your problems are, the more you’re going to be at risk for more severe complications.

 

Fran Kendall • VMP Medical Practice • Atlanta, GA

Q. What should a patient, parent or caregiver do if they contract COVID-19?
A. If a patient would get sick with a fever or cough, or any other symptoms, I would treat it initially as we would treat any flu.  Treatment would depend on what type of mitochondrial disease they have and what their symptoms are.  As an example, for patients with Leigh Syndrome, I am very aggressive getting them intravenous hydration in a hospital-type setting and making sure their ventilatory status and breathing is ok. This is the most critical aspect when a child with Leigh Syndrome gets flu like symptoms or even a bad cold; and it would be the same with coronavirus.  We basically know what to expect when someone gets the flu, and even that can be difficult, but we don’t know what to expect with the coronavirus.  With an adult patient who hasn’t had any medical problems related to ventilatory status, or the ability to hydrate themselves, it would be something that we may be able to handle over the phone and keep them out of the hospital.  A starting point, I would deal with COVID-19 as we would any other type of bad flu-like illness.

 

Bruce Cohen, MD, FAAN •. Akron Children’s Hospital

Q. What is the risk to mitochondrial disease patients in regards to visitors coming to their home, e.g., health care workers, grocery delivery services, etc.?

A. This is the time you want to utilize any online services that are accessible to you. Take extra care with packages that are delivered by wiping everything down that is coming into the house. If something can be left for a few days, then leave it. Have Clorox wipes handy and wipe down anything that comes into your home. Masks are really helpful, especially if someone else is sick, where they are coughing and/or aerosolizing droplets that may have the virus on them. In general, it’s really for other people’s protection; unfortunately, wearing a mask does not give you a whole lot of protection, unless it’s a N95 mask, which are in short supply at this point in time. I would not recommend going out to a grocery store with a regular paper mask and thinking you would be safe and not contract the virus.

 

Amy Goldstein, MD • Children’s Hospital of Philadelphia

Q. If a patient is scheduled for a medical appointment during this pandemic, should they keep it or reschedule, especially the patients that are traveling to see their physicians?

A. It depends on the hospital system and what they are allowing. I have colleagues that are not permitted to have any face to face visits, unless it is emergent, and everything has to be done virtually. In Cleveland, we have been given guidelines for screening. Approximately 90 to 95% of our appointments are being done virtually, whether they are a new patient or a follow up.

 

Sumit Parikh, MD • Cleveland Clinic

Q. What should patient families keep on hand during this time of social distancing and quarantine?

A. It is recommended to have extra medication on hand. There is an allowance for extra months of prescriptions. This is in part to reduce the exposure and the number of times a patient has to leave their home for supplies. For TPN dependent patients, some supplies have a shelf life that you must be aware of; however, there are certain things that do have an extended shelf life like extra tubes and clamps. Focus on critical supplies and medications. If your child is formula dependent, make sure you have at least a one to two month supply.

 

Fran Kendall • VMP Medical Practice • Atlanta, GA