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As you may have noticed, despite receiving the 2014-2015 influenza (flu) vaccine, many people have gotten the flu.  It turns out that the vaccine contained inactivated (dead) virus that protected against 3 strains of influenza:

 

  • Influenza B/Massachusetts (2012-like antigen)
  • Influenza A/California (H1N1 – like antigen)
  • Influenza A/Victoria (H3N2-like antigen)

 

Some received the IIV4 that also protected against the B/Brisbane virus. 

Apparently the strain of influenza A H3N2 of 2014-2015 is slightly different genetically than the influenza A H3N2 of 2013-2014, which was used in the vaccine.  Therefore the influenza vaccine that we all received is able to provide some protection, but not total protection against this slightly new strain of influenza.

 

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 I do if I think my 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) and 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 I can do to help my or my 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.

 

Thank you to Drs. Fawn Leigh (Massachusetts General Hospital), Kathryn Wagner (The Kennedy Krieger Institute), Susan Apkon (Seattle Children’s Hospital), Linda Cripe (Nationwide Children’s Hospital), and Brenda Wong (Cincinnati Children’s Hospital Medical Center), as well as Dr. Rebecca Brady (Division of Infectious Diseases, Cincinnati Children's Hosptial Medical Center) for their assistance in developing recommendations.

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Comment by David on January 10, 2015 at 8:51pm
And, before I forget, It's freaking awesome to have this community. Thanks for being there, where ever there is.
Comment by David on January 10, 2015 at 8:42pm
We just called his primary care physician. We tried urgent care docs they just didn't want to do anything when he has no symptoms.

Staff
Comment by Kathi Kinnett on January 10, 2015 at 8:34pm

Can you call the pulmonologist on call tomorrow?  Let them know the situation?  Maybe give them the "heads up" in case he does develop symptoms?  Or call the primary care provider and let them know the same thing?

Comment by David on January 10, 2015 at 8:31pm
Thanks but I'm asking about more practical issue. Today is Saturday. By the time I contact his docs on Monday, if will be too late to consider prophylaxis.
He is 16, good lung function, no bipap. If I go to urgent care they won't do anything

Staff
Comment by Kathi Kinnett on January 10, 2015 at 8:19pm

David - I am sorry if i have caused any confusion.  As it says above, antiviral medication "may be suggested for people with Duchenne who are living with household members who have been diagnosed with influenza," and also that "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."  If your son is young and/or has no pulmonary dysfunction, your provider may feel that it is in his best interest to wait until he develops symptoms of the flu, indicating his need for antivirals.  As stated above, these medications may have side effects ("nausea, vomiting, dizziness, runny/stuffy nose, cough, diarrhea, headache, and some behavioral side effects; rare occurrences of neuropsychiatric events associated with Tamiflu") and your provider may not want to give your son the risk of side effects unnecessarily.  If this is not the case (i.e., your son is older, has pulmonary dysfunction (using BiPAP at night or day/night), you may want to contact your pulmonologist to get his/her opinion.

Comment by David on January 10, 2015 at 7:07pm
I'm confused about prophylaxis (antiviral medication). Flu is in my house. My son does not yet show symptoms.

I need a prescription for tami-flu, but docs won't give such a thing over the phone. So I would have to make doc visit, which will take days to schedule which sort of defeats the point.

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