The flu virus is constantly changing, with new “models” of flu appearing each year. The Center for Disease Control and Prevention (CDC) looks at the strains of influenza that have affected Australia during their flu season, and does its best to evaluate which strains are likely to be the most prevalent in the US during coming year. While it seems that they haven’t been exactly 100% accurate over the past few years, the vaccines that they recommended did result in both fewer cases of influenza and milder, shorter illness for those who got the flu. We hope this year is even better.
The 2018-2019 flu season (the longest flu season in 10 years, according to CDC data) is finally winding down. While it is impossible to predict how effective the 2019-2020 vaccine will be, it is recommended everyone, six months of age and older, needs to be vaccinated against influenza (flu). It takes about 10 days to 2 weeks for the immunity of the vaccine to take effect, so it’s best to be vaccinated, if possible by the end of October. If you don’t make this deadline, go ahead and get vaccinated, no matter how late it is. It is better to have some immunity than none.
Protecting people living with Duchenne is especially important. A 2005 study done by the CDC found that children with neuromuscular disease are at a six-times greater risk of flu-related respiratory failure. So please vaccinate yourself, your child, and all members of your family.
What’s new for the flu in 2019/2020
- Available, and recommended for people living with Duchenne, is the influenza vaccine, or “flu shot.”
The 2019/2020 trivalent influenza vaccine will include protection against:
- A/Brisband/02/2018 (H1N1) pdm09-like virus
- A/Kansas/12/2017 (H3N2)-like virus
- Influenza B/Colorado/06/2017-like (Victoria lineage) virus
Some will receive the quadrivalent vaccine that also protected against the B/Phuket/3073/2013-like (Yamagata lineage) virus.
- There are several types of influenza vaccines available. Your medical provider will tell you which is most appropriate for you and/or your child.
- Pregnant women should receive influenza vaccine.
- Some children, 6 months old – 8 years old, will need 2 doses of the influenza vaccine.
- If your child is getting vaccinated for the first time, they will need 2 doses of influenza vaccine spaced at least 4 weeks apart
- Children who have only received 1 dose of influenza vaccine will also need 2 doses spaced at least 4 weeks apart.
- Your healthcare provider can find more information on CDC’s Children & Influenza (Flu) page.
- For additional information on the 2019/2020 influenza season and vaccine, please visit CDC’s Frequently Asked Flu Questions 2019-2020 Influenza Season page, as well as CDC’s Information for Schools & Childcare Providers page.
In the United States, the Centers for Disease Control and Prevention develop a vaccine that includes protection against the strains of influenza that were most prevalent in Australia the season before. These vaccines are provided to the public with varying degrees of success. Getting the vaccine does not mean that you won’t get a flu, but it DOES mean that you are unlikely to get the influenza strain that the CDC feels will be the biggest threat and, if you do get that strain of influenza, your illness should be much more severe because you have received the vaccine.
There are different types of vaccines for influenza. People living with Duchenne should only receive the influenza vaccine, rather than the live virus nasal spray. Vaccines available this season include:
- Trivalent vaccine (“Flu shot”)
- Contains protection against 3 influenza viruses (H1N1, H3N2 and one influenza virus); this is the vaccine most often prescribed for those > 6 months of age
- The ONLY people who should not get the flu shot are
- Those under 6 months of age
- Those with severe, life threatening allergies to the flu vaccine
- If you have an egg allergy, you SHOULD receive the flu vaccine after consulting with your primary care provider
- Quadrivalent vaccine
- Adds a second strain of influenza B
- High-Dose Flu Vaccine
- Contains 4 times the antigen of the 3 influenza strains included in the standard flu shot; it is generally recommended for adults over 65yo
- Cell based vaccine
- This vaccine is grown in cell culture and is not dependent on egg supply and has the potential to offer better protection to flu viruses in circulation; available for individuals >4yo
- Intradermal vaccines
- Quadrivalent vaccine that is injected into the skin, rather than the muscle; the needle is 90% more fine than the regular flu shot needle and requires 40% less viral antigen; it is approved for adults 18-64yo; may be helpful for those that dislike needles
- Live Attenuated Influenza Vaccine (Nasal Spray Flu Vaccine)
- Appropriate for people 2 – 49 years old; ok for siblings and parents (check with your primary care provider first), but NOT for those with dystrophinopathy, regardless of whether they are taking steroids.
Symptoms of the flu
Symptoms of flu may include:
- Fever, chills (though not everyone with flu will have a fever/chills)
- Sore throat
- Runny or stuffy nose
- Body aches
- 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.
Medical Management of the flu
The influenza vaccine only protects against certain types of the flu, and is not always 100% effective, even against those certain types. People living with Duchenne are especially vulnerable to the effects of the flu, especially the pulmonary effects.
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 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 two antiviral drugs recommended by the CDC:
- Tamiflu (Oseltamivir, pill or liquid)
- Relenza (Zanamivir, inhaled powder, not recommended for patients with pulmonary problems)
- Baloavir (XofluzaR): single dose pill approved for early outpatient children >12 years
The most common side effects of any antiviral drugs are nausea and vomiting; Zanamivir (because it is inhaled) may cause difficulty breathing and diarrhea. 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.
Over the counter medications that are generally safe for colds and flu can be found below (see: “Besides antiviral medication, what other “over the counter” medications are safe to give a person with Duchenne?”) . If you/your child has a fever over 1040 F that is not responding to Tylenol (going down to at least 102o F 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).
When to seek emergency care
Typical symptoms of the flu include fever, cough, sore throat, runny/stuffy nose, body aches, headache, chills and fatigue. Occasionally symptoms may include vomiting and diarrhea. There may also be respiratory symptoms without fever.
There are warning signs that you/your child need emergency care immediately. These include:
- Fast breathing or trouble breathing
- Bluish lips or face
- Ribs pulling in with each breath
- Chest pain
- Severe muscle pain (child refuses to walk)
- Dehydration (no urine for 8 hours, dry mouth, no tears when crying)
- Not alert or interacting when awake
- Fever above 104°F
- In children less than 12 weeks, any fever
- Fever or cough that improve but then return or worsen
- Worsening of chronic medical conditions
- Dark urine, indicating rhabdomyolysis
- Difficulty breathing or shortness of breath
- Persistent pain or pressure in the chest or abdomen
- Persistent dizziness, confusion, inability to arouse
- Not urinating
- Severe muscle pain
- Severe weakness or unsteadiness
- Fever or cough that improve but then return or worsen
- Worsening of chronic medical conditions
- Dark urine, indicating rhabodymyolysis
These lists are not all inclusive. Please consult your medical provider for any other symptom that is severe or concerning.
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. Please refer to the PJ Nicholoff Steroid Protocol (download) for any questions or concerns.
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 and/or your neuromuscular 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 (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
Is there anything I can do to help my coughing/breathing?
What else can I 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. Please refer to the PJ Nicholoff Steroid Protocol for any questions or concerns.
- Go to the emergency room if necessary; take all of your medications and equipment with you.
- Continue to do what you can to stay as healthy as possible.
A session on Flu and Airway Emergencies was presented by Dr. Lauren Camarda at the 2017 PPMD Annual Conference: