Everyone, six months of age and older, needs to be vaccinated against influenza (flu), and protecting people living with with Duchenne is especially important. A 2005 study done by the CDC found that children with neuromuscular disease are at a 6-fold greater risk of flu-related respiratory failure.  

What’s New for the Flu in 2016:


Because so many people still got the flu despite receiving the 2014-2015/2015-2016 influenza (flu) vaccines, the Center for Disease Control and Prevention (CDC) has made some changes and new recommendations for 2017.

This year, they are recommending that everyone get the influenza vaccine, or “flu shot.” The nasal spray is NOT recommended for anyone this season, as it has been ineffective against influenza A (H1N1) pdm09. 


The 2016/17 trivalent influenza vaccine will include protection against:

  • Influenza A/Hong Kong/4801/2014 (H3N2)-like virus
  • Influenza A/California/7/2009 (H1N1 – like antigen)
  • Influenza B/Brisbane/6-/2008-like virus


Some received the IIV4 that also protected against the B/Phuket/3-73/2013-like virus. 


New vaccines have been accepted as an alternative for older and younger patients:

  • an inactivated influenza vaccine (allV3) for persons >65yo
  • a quadrivalent formulation of Flucelvax (ccIIV4) for persons >4y


Symptoms of the flu:

Symptoms of flu may include:

  • Fever, chills (though not everyone with flu will have a fever/chills)
  • Cough
  • Sore throat
  • Runny or stuffy nose
  • Body aches
  • Headache
  • Fatigue (tiredness)
  • Sometimes diarrhea and vomiting.


Symptoms usually appear 1 to 3 days after exposure. Although most people are ill for less than a week, some people have more serious complications that may require hospitalization.


What should you do if you think you/your child has the flu?


If your child has symptoms of the flu, call your primary health care provider immediately! 

Rapid diagnostic testing, which checks secretions in the throat for the influenza virus, is 50-70% accurate for diagnosing influenza (most providers will send a negative specimen for culture, just to be sure that there is no virus present).  If the test is positive, starting an antiviral medication is recommended.

Antiviral medication should be started as soon as possible in the course of the illness and continued for 5 days. It is best if this medication is started within 48 hours of the beginning of symptoms, but the treatment can still has some benefit if started later, especially for patients who are experiencing a longer or more complicated course.


Antiviral medications:

Antiviral medications can lessen symptoms of the flu and shorten the time of illness by 1-2 days. They can also prevent serious complications of the flu, like pneumonia.

There are 2 antiviral drugs recommended by the CDC this year:

  • Tamiflu (Oseltamivir, pill or liquid)
  • Relenza (Zanamivir, inhaled powder, not recommended for patients with pulmonary problems)

Antivirals may have side effects, including nausea, vomiting, dizziness, runny/stuffy nose, cough, diarrhea, headache, and some behavioral side effects; rare occurrences of neuropsychiatric events associated with Tamiflu. 

Clinical judgment, on the basis of the patient’s disease severity and progression, age, underlying medical conditions, likelihood of influenza, and time since onset of symptoms, is important when making antiviral treatment decisions for high-risk outpatients.


CDC Recommendations:

The CDC recognizes that people living with neuromuscular disease are at higher risk for developing more serious complications from influenza. For that reason, prophylaxis (antiviral medication) may be suggested for people with Duchenne who are living with household members who have been diagnosed with influenza. 

If it is felt to be appropriate to begin antiviral medication, antivirals should begin on the day of the household member’s diagnosis. Again, clinical judgment, on the basis of the patient’s disease severity and progression, age, underlying medical conditions, and likelihood of developing influenza, is important when making antiviral treatment decisions for higher-risk outpatients. 


Missing corticosteroid doses:

If you/your child is taking corticosteroids regularly (daily, every other day), it is very important that you not miss doses.  If you/your child has missed 24 hours of corticosteroids, it is very important that you contact your primary care/neuromuscular provider for IV corticosteroid dosing.  Missing 24 hours, or more, of corticosteroids can result in acute adrenal insufficiency, which can be a life threatening condition. 


Besides antiviral medication, what other “over the counter” medications are safe to give a person with Duchenne?

You should always check with your primary health care provider regarding the safety and dosing of any medications.

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
  • Saline nose drops/spray


Is there anything you can do to help you/your child’s coughing/breathing?

About a year ago, I was fortunate to co-blog with Drs. Daniel Sheehan (Pulmonology, Women and Children’s Hospital of Buffalo, NY) and Jonathan Finder (Pulmonology, Children’s Hospital of Pittsburg).  This blog includes a handout to help patients and parents understand how and when to use a cough assist machine during a respiratory illness (download the handout here). 


If you or your child needs to go to the emergency room, there are many tips in this blog that will make your visit a little smoother.


What else can we do to stay as healthy as possible?

  • Wash hands often with soap and water for 15-20 seconds, especially after using the restroom and changing diapers.
  • If soap and water is not available, use an alcohol based hand sanitizer.
  • Wash your hands before preparing food or eating.
  • Avoid sharing utensils with or drinking after someone who is sick.
  • Avoid touching eyes, nose, and mouth with unwashed hands.


Pearls of Care:

  • Be sure all family members have been immunized against influenza.
  • If you think you/your child with Duchenne has the flu, contact your primary care and/or neuromuscular provider immediately.
  • Use antivirals as recommended (for your child’s flu treatment or for prophylaxis).
  • Take recommended over the counter medications.
  • Maintain cough and breathing.
  • Do not miss more than 24 hours of corticosteroids; if more than 24 hours of corticosteroids are missed, call your primary/neuromuscular provider for IV or IM steroid coverage in order to prevent acute adrenal insufficiency, which may be life threatening.
  • Go to the emergency room if necessary; know what to take with you.
  • Continue to do what you can to stay as healthy as possible.

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Comment by Kathi Kinnett on November 10, 2016 at 1:49pm

Thanks for your comment Andrew. The CDC recommendations regarding immunizations and steroids can be found on PPMD's website: http://www.parentprojectmd.org/site/PageServer?pagename=Care_area_v...

Comment by Andrew Kerr on November 9, 2016 at 7:27pm

Just a quick follow up that anyone on corticosteroids (Prednisone and Deflazacort) are generally considered immunosuppressed (have a weakened immune system).

The nasal spray vaccines are a LAIV (essentially a live form of the influenza virus is in the spray).  It is not recommended for people with weakened immune systems.  Even generally speaking, individuals with DMD should not be taking the LAIV.

That being said, talk with your doctor, but get vaccinations, including influenza, but check if they are live versions first.  We recently had to decline a chicken pox booster for our oldest because it's also a live vaccine.

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