Everything parents need to know about acute flaccid myelitis, the polio-like, paralyzing illness affecting young children

For a parent, the headlines with news about the latest cases of acute flaccid myelitis, a polio-like illness that seems to be targeting young children with symptoms that include weakness and even paralysis, are kind of terrifying.

And, recently, for North Carolina parents, it all got pretty close to home. Earlier this month, the North Carolina Department of Health and Services announced that it was investigating multiple cases of the illness that's been found in a number of states across the country, according to a WRAL-TV story. Officials said three cases of acute flaccid myelitis have been reported in North Carolina this year — two probable and one confirmed.

Around the country, the Centers for Disease Control and Prevention reports a total of 386 confirmed cases since August 2014, but there's been a noticeable increase this year. The federal agency currently is investigating 155 reports. Meanwhile, TV reports show once perfectly healthy young children who are now paralyzed after coming down with the illness.

So, is this the point when parents need to start freaking out?

I checked in with Dr. Debbi Lugo, assistant professor of pediatrics at Duke University School of Medicine's department of pediatrics. A pediatrician, Dr. Lugo's specialties include infectious diseases.

The short answer, says Dr. Lugo, to the question on parents' minds is this: No, they do not need to be freaking out about acute flaccid myelitis, or AFM, as it's also called. While it certainly is serious, it also is extremely rare, she says. What's more, there are some pretty simple steps we can take to help protect our kids from AFM and other viruses.

Here's my Q&A with Dr. Lugo that details just about everything parents need to know about acute flaccid myelitis.

What is acute flaccid myelitis?

Dr. Lugo: Acute flaccid myelitis affects the nervous system, specifically it affects the spinal cord and can cause paralysis. It is a serious condition, but it is very rare. Cases of AFM have been reported previously, but there has been an increase in cases in the United States since 2014, and recently, the number of cases has again spiked.

What do we know about AFM?

Dr. Lugo: Since 2014, there has been an increase in the number of cases of people developing AFM in the United States, mostly children.

We are unclear about the exact cause, as it is likely that not all cases of AFM are caused by the same thing. The Centers for Disease Control and Prevention is investigating viruses and environmental toxins as possible causes.

Most cases occur in the summer and fall.

The cause is still unclear, and it is still unclear why some people may develop AFM after similar exposures. There may also be a genetic component that makes some people more susceptible.

It’s been called polio-like, but is it related to polio?

Dr. Lugo: All of the AFM cases in the United States since 2014 have tested negative for poliovirus. An infection with poliovirus can also cause AFM. Luckily we have a very effective vaccine available that prevents polio.

It is possible that other viruses that are closely related to poliovirus called enteroviruses, may be linked to some of the cases of AFM, and the CDC is actively investigating this link. In 2014, the increase of AFM coincided with an outbreak of a severe respiratory illness caused by enterovirus D68. But this virus was not detected in all patients with AFM that year.

In 2015, there was a decreased amount of enterovirus D68 circulating, but there were still some cases of AFM. This year, there has again been a spike in AFM, but it is unclear if there has been an increase in certain strains of enterovirus. The CDC is actively investigating all cases of AFM.

However, it is important to note there are also other viruses that may sometimes lead to AFM, including West Nile Virus, which is not similar to poliovirus.

It is also very important to note that most infections with viruses, including enteroviruses and West Nile Virus, do not result in AFM. This is a very RARE complication that occurs only in a small percentage of children. Enteroviruses are typically associated with common cold symptoms, and an overwhelming majority of patients infected with enteroviruses will have no symptoms or mild symptoms that may include cough and runny nose.

Who is being diagnosed with it? Are kids especially in danger?

Dr. Lugo: Most patients that have been diagnosed with AFM are young children, but it could affect anyone. Again, until the cause is clear, it is possible there are different causes of AFM that affect patients differently.

What are the symptoms of acute flaccid myelitis?

Dr. Lugo: The CDC lists the following symptoms:

• Weakness in the arms or legs, decreased reflexes, and loss of muscle tone.
• Facial droop or weakness
• Difficulty moving the eyes
• Drooping eyelids
• Difficulty swallowing
• Slurred speech

It is important to note that the symptoms may be mild: difficulty swallowing, weakness of hands, limping, some patients may even experience pain in their hands and feet or tingling.

These symptoms can sometimes be subtle in young children. If your child is behaving abnormally, refusing to walk when they previously would, refusing to use their hands or feet when they previously did, or choking, gagging or coughing while eating, consider contacting your pediatrician to review their symptoms.

What is the treatment? Does everybody recover from acute flaccid myelitis?

Dr. Lugo: The treatment, at this point, would be supportive care, making sure the patient gets the appropriate nutrition and is not having any difficulty breathing. In severe cases, monitoring in a hospital may be needed. At this point, it is still very early. Some of the cases from 2014 had a full recovery. In a small percentage of patients affected with AFM, they may have lasting weakness or other symptoms.

What are signs that my child may have it? What should I do if they get sick?

Dr. Lugo: If your child is exhibiting any of the symptoms listed above, please take them to receive medical care right away as the symptoms can progress, and they may need to be monitored in a hospital . A thorough neurology exam will be important to determine if this is AFM.

How can I help prevent it AFM?

Dr. Lugo: Stay up to date on vaccines for yourself and your child, protect yourself from mosquito bites to prevent viruses such as West Nile Virus, and, most importantly wash your hands! This is the single most effective thing to decrease infection and disease transmission. Also, parents please teach your children the importance of washing hands and how to do it properly. Alcohol-based hand sanitizers can help with some viruses and bacteria, but are not completely effective for all enteroviruses. Good old soap and water is still the best way to go whenever possible!

As a parent, should I be freaking out about acute flaccid myelitis?

Dr. Lugo: No! This is the most important question you have asked me. Freaking out is never a good idea.

I’m a physician, but I’m also a mother to a very active toddler, who is in daycare and constantly exposed to colds. I understand how scary something like this can sound, especially early on when the CDC is still searching for answers. Not knowing is often the scariest part.

But the reality is there are always diseases we need to be concerned about, both new infectious diseases and even those we already know about that continue to circulate. We can’t expect the world to be germ free, and we can’t expect our children to never get sick.

What we can do is use this heightened alarm as a reminder to review with our children the need for regular hand washing and covering their mouths when they cough. Not sending children to school when they have a fever and are ill. We should try to keep them as healthy as possible with regular check ups with their pediatrician and good nutrition, so that when they do get sick, with a common cold or other illness, they can recover quickly.

And, most importantly, please remember that AFM is very, very rare. The chances are still greater than one in a million that a child will be affected by AFM. I think it’s important to keep perspective. More children were seriously ill from the flu last year, and there is a vaccine for that. Let’s use this moment to pause and remember why vaccines are important and how to keep ourselves healthy.