March 23, 2020 Update: Please click here to view our most recent COVID-19 information & FAQs.

COVID-19 & Duchenne: FAQs

We recognize that as the COVID-19 (coronavirus) pandemic continues to evolve and new cases are diagnosed in the US, concerns surrounding infection and prevention measures continue to grow as well. PPMD is in contact with the Centers for Disease Control (CDC) and monitoring for any specific recommendations pertinent to the Duchenne population. PPMD also continues to consult with physicians from many of our Certified Duchenne Care Centers to determine recommendations specific to the Duchenne population.

Below are a list of FAQs regarding COVID-19 and Duchenne. We consulted experts in our community for answers to some of the questions we have received over the last few days.

Do you have more questions that we can help you answer? Send an email to ellen@parentprojectmd.org with your question. We will address as many questions as possible during our interactive webinar on Thursday, March 19, at 12PM EST.

My child is taking cardiac medications. Should he keep taking them?

As outlined in the Duchenne care guidelines, people living with Duchenne are often prescribed cardiac medication with evidence of cardiac fibrosis or changes or by age 10 even with normal imaging. Commonly prescribed medications include Angiotensin-converting enzyme (ACE) inhibitors (i.e. lisinopril, captopril, enalapril, etc.) and Angiotensin II receptor blockers (ARBs; i.e. losartan, entresto, etc.).

We are aware information has been circulated about COVID-19 (coronavirus) potentially having an increased effect on the same receptors that the medications above do. In response, families have been asking about whether they should adjust or discontinue prescribed cardiac medication.

After consulting with several cardiologists from PPMD’s Certified Duchenne Care Centers (CDCCs), they advised that it is in the best interest of patients to remain on cardiac medications as prescribed at this time. There is not enough evidence to know if these medications lead to a more severe COVID-19 infection, and there may be a greater risk in discontinuing these medications in a person living with Duchenne.

If you have any concerns about you or your child’s medications, please consult with your cardiologist or neuromuscular team. PPMD will also be hosting an interactive webinar on Thursday, March 26 at noon with cardiologists from our CDCCs to answer any questions you have.  

We have home nursing (care, infusions). Should I allow them to enter the home? What precautions should we take?

Although PPMD recommends limiting non-necessarily visitors to your home, some aspects of home healthcare are essential. If possible, limit the number of outside healthcare workers that enter your home.  Ensure your home health nurse(s) takes all necessary precautions including hand washing and wearing personal protective equipment (PPE) including properly fitting masks and gloves. In addition, nurses who are sick, or have had potential exposure to someone infected with COVID-19 should not come into work. If you have any concerns, you may reach out to your home healthcare company to discuss a plan that is safest for you or your child.

If your child receives infusions from home, for either a clinical trial or an approved drug, they should continue to do so if possible. Take the same precautions as mentioned above, and if you have any concerns about receiving the infusion, please contact your neuromuscular team or clinical trial site.

My child has weekly (physical and occupational therapy, infusion) appointments at the hospital. Should we cancel, or keep going?

PPMD does not have specific guidance for these decisions, but we recommend isolating your family as much as possible. This means avoiding going out in public, as well as restricting who can enter your home. If possible, cancel or postpone non-emergent appointments. Talk to your child’s neuromuscular team and discuss an alternative plan, such as therapy you can do from home.

As stated above, it is recommended that your child continues to receive infusions on schedule. If you have concerns about traveling or going to a hospital, consult with your neuromuscular care team or clinical trial site about the safest option for your child to continue to receive infusions.

PPMD recognizes there are many unanswered questions about screening, dosing, and immunity in regards to gene therapy. We are discussing these topics with companies and sites and will keep the community informed as more information comes out.

We have an upcoming clinic visit. Should we attend, or reschedule?

At this time, CDC recommends cancelling all non-essential appointments. Speak to your neuromuscular team to identify how they are handling clinic schedules. Some clinics are rescheduling appointments, while others are completing visits via telehealth. This depends on your clinic and their capabilities. If you/your child does not have urgent health concerns, please avoid going to the hospital/clinic.

If you/your child does become ill, do not go to the emergency room or urgent care before speaking with your care provider first. Depending on the situation, they may try to manage the illness remotely. If it is necessary to come to the hospital, they may provide unique instructions for entrance and triage to minimize risk of exposure to COVID-19.

Schools in our area haven’t closed yet. Should I send my child to school, or keep him home?

This depends on several factors: where you live and if there are cases of COVID-19 in your area, risk factors specific to you/your child, etc. Speak with your neuromuscular provider about what makes the most sense for your specific situation. If you are keeping your child home from school, consider implications for the rest of the family, too, below.

Should I send siblings or spouses to school or work? Should I quarantine my spouse from my child who works outside the home?

If you are keeping your child home from school, consider keeping siblings and others living with you at home, too. If they do not utilize the same precautions, they could potentially carry the virus and spread it to other members of the family. For adults living with you who are unable to work from home, consider decontamination practices upon returning home: removing clothing worn outside of the home, immediately showering, practicing hand hygiene, covering their cough, and social distancing. Consider minimizing contact with at-risk people in the home.

My child is on steroids. Should I change his regimen?

No. Even if your child is immunocompromised due to daily steroids, making changes to his regimen puts his adrenal glands at risk, and could make him more susceptible to complications if he were to contract COVID-19. Do not make any sudden changes to his steroid regimen without discussing those changes with your neuromuscular provider. Ensure you have plenty of medication at home and that you have stress dose medication available, too. Speak with your pharmacy about ways to make sure you have enough medication on hand if you are unable to leave your home.

What is a stress dose of steroids, and when should I do it?

A stress dose is an extra dose of steroids that helps your body to deal with significant stressors. Stresses on the body can be mild, moderate, or severe. The table below, from the PJ Nicholoff Steroid Protocol, will help you to recognize which stressors might require a stress dose of steroids. When in doubt, it is generally safer to give a stress dose (which might not be needed) than to not give a stress dose (which really was needed).

Corticosteroid Stress Doses:

Medical / Surgical Stress	Corticosteroid Dosage Day of Surgery (DOS)	Post-operative Taper Regimen
Minor (local anesthesia, < 1 hour) (e.g. inguinal hernia, single tooth extraction, colonoscopy), mild febrile illness, mild, nausea/vomiting, mild diarrhea)	25mg or 30-50 mg/m2 po (if able to take po) or IV hydrocortisone (HC) or equivalent	None Resume maintenance physiologic dose of hydrocortisone when illness, pain or fever subsides
Moderate (e.g. multiple teeth extraction, fracture, pneumonia)	50mg or 50-75 mg/m2 IV hydrocortisone or equivalent	25 mg Q 8 or 50-75 mg/m2/day ÷ q 6 hours X 24 hour. Taper to baseline over 1-2 days.
Major (e.g. Septic shock, multiple trauma/fractures or severe burns, severe systemic infections, major surgery, pancreatitis, orthopedic surgery including open reduction, spinal fusion, etc.)	100mg or 100 mg/m2/dose IV hydrocortisone or equivalent	50 mg IV Q 8 or 100 mg/m2/day ÷ q 6 hours X 24-48hours. Taper to baseline over 1-3 days (continue stress dose if the physical stress (fever or pain) continues).

What about pulmonary function? Do I need to use a cough assist device?

One of the major complications of COVID-19 is shortness of breath (having difficulty getting a full breath).  If you have a cough assist machine or chest therapy device, ensure it is in proper working function and use it as prescribed. If you do not routinely use it, familiarize yourself with it to ensure you know how to use it, should it become necessary. If you are sick, increase the frequency by which you use it, and speak with your pulmonologist about any other recommendations.  Information on the cough assist and “the vest” can be found here.

Not everyone has or needs a cough assist device. If you have normal lung function, your doctor may have not yet prescribed one. That’s okay. If you don’t need one at baseline, using one with COVID-19 may not be helpful. COVID-19 does not typically produce a significant amount of mucus with productive cough, which may also impact the usefulness of a cough assist device. If you are unsure, speak with your pulmonologist for recommendations specific to you and your situation.

What over-the-counter medications are safe to use?

You should always check with your primary health care provider and/or your neuromuscular provider regarding the safety and dosing of any medications. Over-the-counter medications that are generally safe for colds and flu can be found below.  If you/your child has a fever over 104⁰ F that is not responding to Tylenol (going down to at least 102^o F within 1-2 hours of giving Tylenol), please ask your primary care provider and neuromuscular team if it is safe to use ibuprofen (Advil^R) and/or naproxen (Aleve^R).  Be sure that the person that you ask is aware of ALL medications that are being taken (including ACE inhibitors).

For children over 4 years, the following over-the-counter medications are generally safe for people with Duchenne to take:

• Tylenol (acetaminophen)
• Cough medicine without Sudafed – cough medicine with cough suppressant should be used if the cough is interfering with sleep; using cough medicine with cough expectorants, using Mucinex, maximizing hydration, and using the cough assist during the day may help minimize coughing at night
• Cough drops
• Mucinex (check with your pulmonologist; some pulmonologists caution against using Mucinex in patients with breathing dysfunction; the thinned secretions may cause aspiration of the secretions, which can lead to an increased risk for pneumonia)
• Saline nose drops/spray

I heard that ibuprofen is dangerous to give to people who have COVID-19. Is that true?

There is a lot of information swirling around about medications that are safe or unsafe to give to someone who has COVID-19. It is unclear if ibuprofen makes COVID-19 better or worse. However, ibuprofen can be harmful to people with Duchenne and put people at risk for bleeding. For pain and fever management, acetaminophen (Tylenol) is recommended. If you are concerned about use of ibuprofen, acetaminophen, and other over-the-counter medications, consult with your neuromuscular doctor.