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What All Disability Parents Need to Know About Life-Threatening Sepsis

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This is a post prepared under a contract funded by the Centers for Disease Control and Prevention (CDC) and written on behalf of the Mom It Forward Influencer Network for use in CDC’s Get Ahead of Sepsis educational effort. Opinions on this blog are my own and do not necessarily reflect the views of CDC.

I’m a worrier. It’s my nature. Having a disabled child, and one who is both non-verbal and medically complex, only exacerbates my worrying.

In the past 15 years, I have actually known of two people who have died of sepsis. I mean, I know thousands more have, but these were people who I actually knew and had met. A friend of a friend, if you will.

One was a child and they thought that she had the flu.

The other was a mom, and she was just doing the mom-thing being super busy around the holidays. She got sick, kept going and going (like Moms do!) thinking it would pass. A few days later she was dead.

It happens that fast.

So, now I worry about sepsis. Especially with Kevin. He falls frequently due to poor motor planning and due to seizures. He often has bruises and cuts from these falls and he’s not usually cooperative about letting us inspect and treat wounds.

What is Sepsis?

  • Sepsis is the body’s extreme response to an infection. It is life-threatening, and without the treatment, sepsis can rapidly cause to tissue damage, organ failure, and death.
  • Sepsis happens when an infection you already have—in your skin, lungs, urinary tract or somewhere else—triggers a chain reaction throughout your body.
  • Anyone can get an infection, and almost any infection can lead to sepsis.
  • Sepsis is a medical emergency. More than 1.5 million people each year in America get sepsis, and at least 250,000 people die as a result. Delayed recognition and treatment increases patients’ risk of death.

What worries me more is that he has a strange and extreme body reaction to bug bites. Not anaphylactic shock, which is scary too. But bug bites affect him differently than they do most kids. Twice he has developed cellulitis from mosquito bites and cellulitis can turn into sepsis.

cellulitis mosquito bites
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This is what happens to Kevin with an ordinary mosquito bite. Had I not posted this photo on Facebook and had a nurse respond that I need to go see a doctor ASAP, the outcome could have been quite different. This is from 2013.

Signs and Symptoms of Sepsis

The only thing that curbs my worrying is knowing the signs and symptoms, going with my gut, and knowing my child.

  • Sepsis symptoms can include one or a combination of the following:
    • Confusion or disorientation
    • Shortness of breath
    • High heart rate
    • Fever, or shivering, or feeling very cold
    • Extreme pain or discomfort
    • Clammy or sweaty skin
  • How can I get ahead of sepsis?
    • Talk to your doctor or nurse about steps you can take to prevent infections. Some steps include taking good care of chronic conditions and getting recommended vaccines.
    • Practice good hygiene, such as hand-washing, and keeping cuts clean and covered until healed.
    • Know the symptoms of sepsis.
    • ACT FAST. Get medical care IMMEDIATELY if you suspect sepsis or have an infection that’s not getting better or is getting worse.

As moms to disabled kiddos, that’s the best we can do. Know the signs and symptoms, and know what to do. Most of us have good and close relationships with our medical care providers since our kids are at high risk for so many things. Every night when I put on his pajamas and every morning before/during his shower, I inspect him for bumps, bruises and injuries. Just part of our daily routine.

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Sepsis is a medical emergency. If you or your loved one suspect sepsis or has an infection that’s not getting better or is getting worse, ask your doctor or nurse, “Could this infection be leading to sepsis?”

To learn more about sepsis and how to prevent infections, visit www.cdc.gov/sepsis.

For more information about antibiotic prescribing and use, visit www.cdc.gov/antibiotic-use.

Also read:

There is no magic pill. Why it’s important to Be Antibiotics Aware.

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