COVID-19 Recommendations for the Duchenne Community

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. Please bookmark this page and check back regularly as new information and resources become available.

Current Situation

Precautions & preparations

Response March 12, 2020

The CDC recently provided guidance for people athigher riskof developing complications from coronavirus:

  • Stock up on supplies
  • Maintain infection prevention measures (detailed below)
  • Stay away from those who are sick, limit close contact with people, and wash your hands frequently
  • Avoid crowds as much as possible
  • Avoid cruise travel and other non-essential travel, especially by air
  • Stay home as much as possible to reduce exposure
Higher risk populations are defined by the CDC as those who are:
  • Older adults
  • People with heart disease
  • People with diabetes
  • People with lung disease

As people with Duchenne are immunocompromised (if on steroids) and have heart and lung problems, this puts them at higher risk.

Precautions and Preparations

Infection prevention and controlpracticesare key. As a reminder, these practices include:

  • Avoid close contact with people who are sick
  • Wash your hands often with soap and water for at least 20 seconds
  • If soap and water are not available, use hand sanitizer with at least 60% alcohol
  • Avoid touching high-touch surfaces in public places
  • Avoid touching your face, nose, eyes, etc.
  • Clean and disinfect your home to remove germs
  • Avoid crowds and poorly ventilated spaces
  • Avoid non-essential travel
  • While there are a variety of types of face masks on the market, they are largely ineffective in preventing disease. Masks protect others from you if you are infected, but they do not protect you from others. Use of masks can also inadvertently lead to increased touching of the face, which increases risk of becoming infected.

If you are a person with Duchenne, or care for a person with Duchenne, please consider the following best practices:

  • 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.
  • If you are on daily steroids, please coordinate with your prescribing physician to ensure you have oral and injectable stress doses available at home if you develop a high fever.Do not make sudden changes to your steroid regimen.
  • Make sure you have a supply of acetaminophen (Tylenol) for fever reduction.
  • Ensure all prescribed medications are up to date and you have an adequate supply at home. Speak with your pharmacist about filling medications early if necessary.
  • If you are concerned about attending school and are immunocompromised and/or having impaired lung function, speak with your neuromuscular team about whether staying home from school is best for you.
  • Consider rescheduling non-essential medical evaluations, discussing telehealth options with your providers, and avoiding travel to hospitals to reduce the chance of exposure.
  • While coronavirus is different from the flu, considerthe following illness management recommendations.
  • Keep in mind other emergency care considerations.

What to do if Ill

Response March 12, 2020

Cases of coronavirus in children are rare, typically very mild, and do not require hospitalization. However, mildly affected children may pass coronavirus to people with whom they come into contact, like older adults and people at higher risk. To date, there are no documented cases of coronavirus in a person with Duchenne.

If you feel you or a family member shows symptoms of coronavirus --fever, cough, shortness of breath-- contact your medical providerimmediately. Emergency warning signs of coronavirus includedifficulty breathing, persistent pain or pressure in the chest, new confusion or inability to rouse, and bluish lips or face.

There remains little information known about the effect of coronavirus on Duchenne, but if a person with Duchenne were to contract coronavirus, multidisciplinary care including neurology, pulmonology, and infectious disease, and many others would be required. If you are concerned that you or someone you care for with Duchenne has contracted coronavirus, please contact your medical team for guidance specific to your circumstances.

Please know that PPMD continues to monitor coronavirus developments closely and is in regular communication with the CDC and Duchenne physician community. We recognize that an outbreak like this is scary, and we are working tirelessly to provide accurate, up to date recommendations for families. Please keep an eye out for additional information from both PPMD and CDC as it becomes available.

Frequently Asked Questions

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.

Please continue to submit questions to ellen@parentprojectmd.org, so we can continue to adapt our resources to your concerns.

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

Response March 17, 2020

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.

What if I am on an FDA approved therapy that is on a weekly schedule?

Response March 23, 2020

For those patients on approved therapies such as EXONDYS 51 or VYONDYS 53, we do not consider these treatments to be elective and to the extent possible should not be delayed. Patients should reach out to their healthcare providers as well as Sarepta Assist to work through your infusion schedule so that long periods of delay in treatment can be avoided. To contact Sarepta Assist call 1-888-SAREPTA (1-888-727-3782). Case Managers are available Monday Friday 8:30am 6:30pm ET

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

Response March 17, 2020

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?

Response March 17, 2020

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?

Response March 17, 2020

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?

Response March 17, 2020

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?

Response March 17, 2020

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?

Response March 17, 2020

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?

Response March 17, 2020

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. This table 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).

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

Response March 17, 2020

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?

Response March 17, 2020

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 1040F that is not responding to Tylenol(going down to at least 102oF within 1-2 hours of giving Tylenol), please ask your primary care provider and neuromuscular team if it is safe to use ibuprofen (AdvilR) and/or naproxen (AleveR). 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 medicinewithout 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 withbreathing 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?

Response March 17, 2020

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.