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Two Virginia children diagnosed with polio-like illness AFM

Health departments across the country, including the Virginia Department of Health, state the condition is difficult to diagnose and does not have an effective treatment or a cure.

STAUNTON, Va. (News Leader) — Jeremy Wilcox of Herndon pleaded with his local news station to tell people about what happened to his 4-year-old son Joey.

Diagnosed with Acute Flaccid Myelitis (AFM), Joey became paralyzed from the neck down from the polio-like illness, a condition that affects the nervous system, specifically the gray matter in the spinal cord.

"Joey came down with a fever which quickly progressed to him being paralyzed from the neck down," his father Jeremy Wilcox told ABC7 News-WJLA.

Health departments across the country, including the Virginia Department of Health, state the condition is difficult to diagnose and does not have an effective treatment or a cure.

"We have not been able to find the cause of the majority of AFM cases," said Nancy Messonnier, director of the CDC National Center for Immunization and Respiratory Diseases. "AFM can be caused by other viruses such as enterovirus and West Nile virus as well as environmental toxins and autoimmune disease."

The CDC reported 22 cases in 2015, 149 cases in 2016, 33 cases in 2017 and 273 suspected cases for 2018, with 106 cases confirmed in 29 states. According to the CDC, more than 90 percent of the patients are young children.

"We are actually looking at everything. We are looking beyond the normal infectious diseases that can cause this," said Messonnier.

Credit: Submitted/York Daily Record
Sebastian Bottomley was diagnosed with AFM in 2016 and has had three surgeries to date.

According to State Health Commissioner Norman Oliver, letters were sent out a month ago to medical professionals across the state by the health department to report any signs of AFM, and on Nov. 8, the Virginia Department of Health documented they received reports of children with symptoms and signs of AFM.

Oliver wrote in the report that while AFM isn't listed as a disease that must be reported to the health department, it is a public health concern and should be reported.

Brooks told ABC7 News that his son Joey is getting stronger since he first came down with a fever that led to paralysis.

"He’s working on his upper mobility. He’s got some weakness," Brooks told ABC7 News. "He's able to suck through a straw again."

In addition to Joey's case, 11-month-old Ryan Brooks of Stafford County also has the rare polio-like condition. Brooks was originally diagnosed at Children's Hospital of King's Daughter in Washington, D.C.

Ryan's father Donald Brooks told the Free Lance-Star that the family came down with a virus a month prior to his son getting a cold, cough and low-grade fever that morphed into paralysis, indicating Ryan had developed the polio-like illness.

Before Ryan displayed signs of limb weakness, his parents told the Free Lance-Star they took him to the pediatrician, who said he had probably had one of the viruses going around.

When Ryan's mom Valerie Brooks noticed he wasn't using his right leg while he crawled, she thought he may be tired from being sick. When he couldn't stand up in his crib, she and her mother touched his leg without any response from him.

"We want parents to know that if they see any weakness in any limb, that’s a big, red flag,” Donald Brooks told the Free Lance-Star, adding they should seek immediate medical attention.

On Oct. 17, they took him to the nearest urgent care facility where the attending physician recommended Ryan see a neurologist in order to perform further testing, and he was then transported by ambulance to Children's Hospital.

Ryan became worse in the following days as the paralysis spread throughout his body, and the hospital put the baby in isolation until they could make a diagnosis.

“He was just like a bag of jelly,” said Valerie Brooks to the Free Lance-Star. “None of his muscles were engaging.”

Ryan was treated with antibiotics, steroids and intravenous immunoglobulin treatment and "hospitalized for 20 days, first in Washington and then at Children’s Hospital of the King’s Daughter in Norfolk for intense physical therapy," parents told the Free Lance-Star.

A doctor can tell the difference between AFM and other diseases with a careful examination of the nervous system, looking at the location of the weakness, muscle tone, and reflexes. MRIs are helpful in diagnosing cases of AFM, and laboratory tests are needed to confirm the virus responsible for the illness.

"What we don’t know is what's triggering AFM," said Messonnier. "It may be one of the viruses we have already tested. It may be a virus we haven’t yet detected. Or it could be the virus is kicking off another process, and it is actually triggering AFM through an autoimmune process."

Other causes of AFM that are being explored by the CDC include environmental toxins and genetic disorders.

MORE: What we do and don't know about AFM

According to the CDC, there is no specific treatment for AFM, but a doctor who specializes in treating brain and spinal cord illnesses may recommend interventions on a case-by-case basis, such as physical or occupational therapy to help with arm or leg weakness caused by the illness.

"We're frustrated that we haven't been able to identify the cause of illness," said Messonnier.

As of Nov. 26, nine additional cases of suspected AFM have been reported to the Virginia Department of Health and are currently under investigation. By code and policy, the health department cannot discuss the details of individual cases.

Credit: BART BOATWRIGHT, Greenville News
Physical therapist Chelsie Reed works with 3-year-old Preslee Holcomb, who has a rare condition called AFM, Monday, October 22, 2018 at the Shriners Hospital for Children in Greenville, South Carolina.

In a CNN report, parents of children diagnosed with AFM accused the CDC of hiding the deaths of two children to intentionally downplay the seriousness of the illness.

"I feel like they're just sugar-coating this," Katie Bustamante told CNN, whose son Alex, age 6, died in May. "It eliminates my trust in the CDC."

The News Leader contacted Laura Kornegay, director of Central Shenandoah Health District to find out if any cases have been reported locally. According to Kornegay, they have not had any confirmed cases of AFM, direct calls from the general public or concerns from the hospital systems they work with on a daily basis.

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