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Related parents also struggle with polio-like acute weak paralysis

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Av Maggie Fox

Dr. Riley Bove knows about nerve damage. She is a neurologist specializing in multiple sclerosis and educated at the highest medical schools.

But Bove has to fight for help with his son Luca 201

4 when he developed what is now known as acute windy myelitis – the polio-like syndrome that paralyzes or weakens the muscles, sometimes permanently.

Bove and two other parents described their ongoing struggle with AFM, from getting doctors to take their children‘s symptoms serious against day-and-day-out fighting to treat children with devastating and irreversible nerve damage. They sense delays in research that can lead to better treatments and still lack of education about the problem in the medical profession.

Four years after it was first identified, acute windy myelitis is a challenge for doctors and public health professionals. Centers for Disease Control and Prevention said that it looks very like a virus – probably more than one – either attacking the nerves or renouncing an autoimmune response that damages the nerves. However, CDC says there is still no clear cause of the condition, which has so far been diagnosed in 116 patients.

“We demand more from the CDC for fast case estimation (including cases before 2014) and motion against a vaccine,” Bove and her grandparents write in a letter to JAMA Pediatrics magazine. “

” Secondly, , when we got our children new weaknesses for the evaluation of the pediatrician or an emergency clinic where most of our children have never undergone a neurological evaluation, “they added.” Acute limb is typically obvious, but many of us were told, “Han is weak from its fever “or” It’s in her head. “This led to delays in evaluation, neuroimaging and swabbing for possible infectious pathogens. “

Bove, who has had contact with hundreds of other parents, says her experience is typical.

” We became all sick – the whole family, preschool, everyone got sick with fever and coughing and colds “Bove, now a neurologist at the University of California San Francisco, told NBC News.

“We all have it over.” But Lucas fever came back. “He woke up with a very weak neck and right arm,” said Bove. Bove finished his qualifications at Harvard Medical School and knew that these signs meant that Luca needed immediate medical care. But she was also careful when she guessed her child’s doctor and did not drive back when Lucas’s regular pediatrician seemed worried.

“He was dizzy and weak. He could not climb the examination desk at the doctor’s office, said Bove. “They still did not do a neurological exam.”

When Lucas’s symptoms failed to resolve when the day passed, Bove sent him back for a second check. Again he was sent home. By that evening, she was worried about sending a video to a friend at the Boston Children’s Hospital. Acute weak myelitis had been making headlines for several weeks, and the friend immediately suspected that it could affect Luca. That’s when all ends were pulled out.

“We took him into Boston Barns,” said Bove. “We got everything quickly, diagnosed within 24 hours and started aggressive treatment. Despite that, he began to get worse and worse.” By the eighth day, he was paralyzed from head to toe. “

None of the treatments worked. Doctors tried steroids, infusions of antibodies and a blood treatment called plasma pharma and an antiviral drug. It was months before Luca could go again and now he has permanent nerve damage that has stopped the growth of the right arm and shoulder. He looks, says Bove as a polio survivor, even though CDC and other experts are convinced. Polio does not cause the syndrome of these children.

Now Luca is wearing a head rest and participates in some form of therapy three to four days a week. “Physically, he can not accompany his friends,” says Bove.

Bove wants parents to know that they are looking for what is still an extremely rare condition. Only 440 cases have been verified since 2014, according to CDC.

“We’re deceiving the last days when our children usually climbed on their last playground structures or took their last runs down the block or their last independent breath.” Bove wrote along with Erin Olivera, a Los Angeles registered nurse whose son developed the syndrome 2012 and Heather Werdal of Bremerton, Washington, whose son Hayden was influenced in 2014.

If such well-informed professionals fight, Bove said parents with little or no medical knowledge and fewer resources are even more disadvantageous.

“I’m a Harvard-educated neurologist with all this asset,” said Bove. “My child is vaccinated. We are insured. I trained with people familiar with AFM.”

Most patients with AFM have suffered from what appears to be a viral infection, CDC said. “But as long as we are, we can not find the fault,” Bove said. “We do not know long-term results. We do not know how to promote bone growth,” she added. “We know so little and everyone is a little in the dark.”

Researchers like Dr. Kevin Messacar of Children’s Hospital Colorado says that they have identified at least two viruses that can cause the condition: EV-D68, which usually causes symptoms similar to the cold and EV-A71, which can cause foot and mouth disease. Poliovirus is the most infamous cause of AFM-like conditions, but polio is no longer circulating in most of the world, especially in the United States, and no AFM patient has had polio.

Separately in the same magazine, Messacar and co-researchers who have built their own network to study AFM and share information about it points out that sometimes syndrome symptoms are easy to miss. “When AFM is suspected, hospitalization is recommended because patients may experience rapid deterioration of respiratory impairment,” they wrote. Some children may need to go straight to the intensive care because of the risk of rapid breathing difficulties.

It is also important to know what is and what is not AFM, because conditions similar to AFM can sometimes be treated. 19659007] Three of the experts analyzed the records of 45 patients suspected of having AFM and found many instead had transversal myelitis, which can be treated with an immunosuppressant or spinal cord reaction. Some had Guillain-Barre syndrome, a condition called Chiari I myelopathy or meningitis.

“The patients with definite AFM had fever or viral infection before weakness in their arms or legs,” they wrote. “They also lost the function of their limbs on one side of the body first with most children who lost the function of a single limb or all four eventually.” Doctors must be looking for these symptoms, they advised.

There can be a treatment that can help, they said. “Children with AFM respond better to immunoglobin infusions – a collection of antibodies that can help pathogens as intruders, so the immune system can eliminate them,” they wrote. “This is an area of ​​urgent need for further research.”

Then. Kirsten Gillibrand, DN.Y., has asked her colleagues to allocate $ 1 billion at the end of the year to CDC for her new workgroup to deal with AFM.

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