Here's what parents of Arizona babies need to know about parechovirus

Parents should be aware but not alarmed about a recent federal health warning on parechovirus in young infants, two leading Arizona pediatricians say.

Parechoviruses are a group of viruses that cause a range of disease in humans and are known to circulate in summer and fall.

"I think it's true we are seeing more cases of the parechovirus, but it is not true that there's any higher degree of bad disease or negative outcomes," said Dr. Sean Elliott, medical director of infectious diseases and immunizations for the Arizona chapter of the American Academy of Pediatrics.

"This is a seasonal virus. We do have clusters of cases every year, typically around the summer. ... Some years are good years, and some years are not so good years. To that regard I think we are seeing more cases of parechovirus in young children this summer."

The Centers for Disease Control and Prevention on July 12 issued a parechovirus health alert that says clinicians should consider a parechovirus diagnosis in infants who have fever, sepsis-like syndrome (symptoms like not feeding well, being irritable, and rapid breathing or breathing pauses), or neurologic illness like seizures and meningitis without another known cause.

The test for parechovirus is aggressive: a spinal tap.

"We don't want them (parents) to be alarmed. We want them to be aware of the virus and the types of presentations it can cause and also how they can prevent transmission of the virus," said Dr. Wassim Bllan, a pediatric infectious diseases specialist at Phoenix Children's Hospital.

"There are reports coming from other states where it seems the trend is higher than other years. But the comparison to previous years isn't easy because this is not a reportable disease, so there is no mechanism in place to count those numbers."

Human parechovirus is not a new virus — every year it tends to cause illness in some very young infants. And since there's no requirement that health providers report parechovirus cases to public health, there's no way to gauge exactly how big of a problem it's been year over year.

What is new this year is that there have been reports around the country of an unusually high number of parechovirus cases, including a cluster of 23 cases that led to hospitalization in previously healthy young infants at a Nashville hospital over six weeks in April and May.

None of the Tennessee infants died, but two of the 23 had complications, including one who experienced persistent seizures and was anticipated to experience severe developmental delay, and another who was at risk for hearing loss and blood clots, according to a CDC report. The report calls the Tennessee cases "an unusually large cluster" of infections.

Shortly before the CDC issued its parechovirus health warning, several media outlets had reported on the June 24 death of Ronan Duffy Delancy, a Connecticut infant who died of parechovirus when he was 34 days old. His parents are now trying to raise awareness about parechovirus.

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'Our baby woke up inconsolable'

Phoenix journalist Jen Fifield recently tweeted about her baby's experience with parechovirus, which included hospitalization.

In an interview, she said she decided to share her experience because her son did not initially have a fever, which is one of the parechovirus symptoms. She knew something was very wrong but had to be persistent to get medical attention for him.

"Our baby woke up inconsolable late Sunday night. He didn’t have a fever according to our head thermometer. He refused to nurse or lay flat the rest of the night," she tweeted on Aug. 5.

When she called the doctor in the morning, she was told they only consider a fever to be 100.4 and that all the doctors were too busy to see her baby, whose rectal temperature was 99.2, she tweeted. But Fifield persisted, and insisted that her baby get medical attention, which he ultimately did.

"Trust your parental instincts," she tweeted.

Her son's condition worsened and he was hospitalized.

"His oxygen dipped at times. I’ll never forget watching the ER nurses scramble to find an oxygen mask small enough for my tiny baby. His temp at times was near 103," she wrote.

"He slowly improved and we got home yesterday. Other newborn parents aren’t so lucky and as I type this I’m still scared we will end up back in the hospital —  he’s not through this all the way yet."

Fifield told The Arizona Republic on Wednesday that her baby has continued to improve.

Here are five things for parents to know about parechovirus:

Parechovirus infection is most concerning in infants younger than 3 months

"The group of patients that gets in trouble with the virus and may need to be admitted to the hospital are the young infants, less than 3 months of age," Ballan said.

"The reason is that any fever in a child who is less than 3 months of age is usually evaluated differently than older kids because they are at high risk of complications."

Infants in the Tennessee cluster ranged in age from 5 days to 3 months old. The median age was 24 days. Thirteen of the infants were girls and 10 were boys, the CDC report says.

Older infants and toddlers may have mild symptoms but can infect their younger siblings

Anyone can get infected with parechovirus, but only infants and toddlers tend to get symptoms and illness from it.

In older infants and young children, symptoms are typically mild, such as a rash, cold symptoms or sometimes gastrointestinal issues like vomiting and diarrhea.

The danger is that they can pass the virus onto their younger, more vulnerable siblings.

"If you have a child at home with those types of symptoms and you have a young infant at home, you have to be very careful," Ballan said.

"It's (transmitted) through droplets from respiratory secretions and from stool ... handwashing is going to be the most important mode of prevention."

Both symptomatic and asymptomatic infected individuals can transmit parechovirus, the CDC health alert says.

Shedding from the upper respiratory tract can occur for one to three weeks and from the gastrointestinal tract for as long as six months after infection, and the incubation period is unknown, CDC officials say.

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Test for parechovirus includes a spinal tap but has not always been routine

The test to confirm a parechovirus diagnosis detects the RNA of the virus in cerebrospinal fluid, which requires a lumbar puncture, often known as a spinal tap.

The test looks for more than just parechovirus, Elliott said. Some hospitals, like Tucson Medical Center where Elliott works, have the specialized test in-house.

"It detects like 15 different infectious pathogens, one of which is the parechovirus," Elliott said. "Whereas before, we never knew that kids had it because we did not have a specific test. We just chalked it up to routine summer viral meningitis of unknown etiology ... Now we can put a name on it because we have a test."

The spinal tap is an aggressive test, but in a very young infant it's often the only way to know what's wrong, he said.

"Babies are not very good at telegraphing symptoms," he said. "I cannot trust an exam on a 6-week-old to tell me if they have evidence of meningitis. We're far more likely to do aggressive testing on young children who just cannot give us all the answers we need clinically."

Also, making the diagnosis of parechovirus can be helpful to avoid further testing on babies for other causes of their symptoms, Ballan said.

Symptoms of parechovirus in babies can include fever, fussiness

Fifield, a former Arizona Republic reporter, wrote that signs to watch out for include a newborn who suddenly is very upset, can’t or won’t nurse or eat, and seems different.

For some infants that's an inability to sleep, for others it may be sleeping more than usual, Ballan said.

Babies who are getting ill from parechovirus typically have fever, fussiness and a decreased appetite, Elliott said.

"That is certainly not unique to parechovirus," Elliott said. "Unfortunately it could also be a more severe bacterial infection. With fevers, fussiness and not feeding well, they need to contact their primary care provider and ask for the next steps."

Most babies with parechovirus end up recovering, even if hospitalized

"The good news with this (parechovirus) is that the majority of patients who develop the infection, they actually recover with no long-term problems, even without treatment," Ballan said.

"Realistically there's no treatment for this virus. This is a virus that we don't have an effective medication to treat, so all we do even when we make the diagnosis, it's just supportive care — make sure the child is not getting dehydrated, they are starting to improve before we send them out of the hospital."

Some infants with parechovirus will have seizures and additional complications, up to and including death. But such cases are rare.

"The babies (with parechovirus) that I've diagnosed and treated have all gone home with no complications after a very short hospital stay," Elliott said.

Reach the reporter at Stephanie.Innes@gannett.com or at 602-444-8369. Follow her on Twitter @stephanieinnes

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This article originally appeared on Arizona Republic: Parechovirus: What parents of Arizona babies need to know