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What You Need to Know about Duchenne & Viral Gastroenteritis (That Horrible Stomach Bug!)

Viral gastrointestinal (GI) viruses are no fun for anyone, but they are especially worrisome for a person living with Duchenne muscular dystrophy. GI viruses affect the GI track – the stomach and intestine (i.e., ‘gut’) – resulting in abdominal pain/discomfort, nausea, vomiting, intestinal pain/discomfort, cramps and diarrhea. Thank goodness they usually have a ‘short course,’ most lasting less than 24 hours. 

 

What should I do if I am/my child is vomiting or has horrible diarrhea?

 

  • Steroids

    If you/your child is taking daily corticosteroids, steroid doses should not be missed for more than 24 hours.* Missing more than 24 hours of corticosteroids can result in acute adrenal insufficiency, or adrenal crisis, which can be a life-threatening conditionClick here to learn more about the effects of missing more than 24 hours of steroids.

    If vomiting continues, and steroid doses are missed for more than 24 hours, you will need to go to a hospital or urgent care either for:

    1. Medication to help stop vomiting long enough to take the oral steroid dose, or
    2. IV steroid dosing to replace the missed oral steroid dose. 


    Emergency steroid recommendations
    can be found on PPMD's website, the PPMD emergency card, and the PPMD mobile app

     

    A GI virus is most likely a “minor stress” to the body, and will not require stress dosing of steroids. If stress dosing is needed, stress doses can be found in the PJ Nicholoff Steroid Protocol. If you are concerned, contact either your primary care or neuromuscular care provider.

    *24 hours from when the last dose was due. For example: If you are due to take a dose at 7am Monday, and miss it, you should get a dose in before 7am Tuesday or seek medical attention if that is not possible.

 

  • Eating and Drinking

    While dehydration is a worry, it is really important to ‘rest’ an unhappy GI tract. If there is vomiting, please do not try to eat or drink anything until vomiting has stopped for at least an hour.

    When vomiting has stopped for at least an hour, reintroduce fluids very slowly, starting with ice chips or sips of clear liquids

    After at least 2 hours of no vomiting, reintroduce foods very slowly, starting with very small amounts of very bland foods (crackers, toast, etc.).

    If vomiting continues longer than 24 hours, or if you are concerned, contact your primary care provider.

 

  • Dehydration

    The major complication of GI viruses is dehydration. Signs of dehydration can differ with the age of the person. 

    Symptoms of dehydrations to watch for are:

    Infant or young children
    • No wet diapers for >3 hours
    • No tears when crying
    • Listless, limp, lethargic or irritable
    • Sunken eyes, cheeks
    • Dry mouth and tongue
    • Sunken soft spot on top of skull

     

    Older children, teens and adults

    • Confusion, disoriented, ‘not acting themselves’
    • Dizziness
    • Fatigue
    • Dark colored urine, less frequent urination
    • Extreme thirst

     

    Call your primary care provider:

    • Diarrhea or vomiting for 24 hours or more
    • Irritability, disorientation, or fatigue/sleepiness more than normal
    • Can’t keep fluids down
    • Bloody or black stools

     

  • Fever

    Fever is a natural defense mechanism of the body to get rid of bacteria and viruses.

    If you or your child is vomiting, do not give medications to bring down the fever (ibuprofen (Advil) or acetaminophen (Tylenol) until you/your child is able to tolerate liquids.

    Fevers below 100 degrees Fahrenheit do not need to be treated; if the fever is above 101 degrees Fahrenheit, or a fever that is lasting longer than 8-12 hours, contact your primary care provider.

  • Risk of Aspiration

    With vomiting, there is a risk for aspiration that can lead to pneumonia. This becomes especially dangerous for older people with Duchenne who cannot turn their head to the side, sit up or roll over when vomiting. It is extremely important that extreme caution is taken by caregivers to do as much as possible to prevent aspiration during these episodes.

 

 

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
  • Be sure all family members have been immunized against the flu

 

Please do your best to stay healthy!

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