A young survivor of a rare disease similar to polio is in full swing

Lydia Pilarowski had a fever and a cough that turned into intense pain. She had unusual weakness and could not move her left arm.

The sudden fragility of the girl and her agony disconcerted and frightened her family.

That was in 2014, when Lydia was 6 years old and she had been diagnosed with acute flaccid myelitis, a rare but serious neurological disease similar to polio that affects the brain and the nervous system.
According to the US Centers for Disease Control and Prevention, symptoms may include sudden limb weakness, loss of muscle tone and reflexes, loss of face and eyelids, difficulty moving eyes, difficulty swallowing or speech disorders.

"The most serious symptom of AFM is respiratory failure that can occur when the muscles involved in breathing weaken. This may require urgent support of the ventilator (respirator). In very rare cases, it is possible that the process in the body that triggers the AFM also triggers other serious neurological complications that can lead to death, according to the CDC.

Now, at age 10, Lydia has a lingering weakness in her arm, but overall, "she's really leading a wonderful life at this point," said her mother, Dr. Sarah Pilarowski, a pediatrician in the Denver area.

"Often, I ask," Why me? "But often, I say to myself" at least, it was not in my legs nor in my right hand "because I am right-handed, so it would be much worse," said Lydia.

Lydia hopes to be a beacon of hope for a growing number of people in the United States – mostly children – in whom the condition has been diagnosed.

According to the CDC, as of September 30, 38 cases of AFM have been confirmed in 16 states of the country. Figures appear to be increasing and several other cases have recently hit Illinois, Colorado, Washington State and Minnesota.

Since August 2014, when the CDC began to monitor the disease more closely, the agency confirmed 362 cases.

Last year, 33 cases were reported in 16 states. One hundred and forty-nine cases were reported in 39 states in 2016 and 22 in 17 states in 2015.

The causes of AFM are multiple, such as viruses, environmental toxins and genetic disorders. Lydia's AFM was responsible for an enterovirus, a type of common virus that usually increases in summer and fall.

"The most common etiology is probably a viral infection that triggers the process, and there are probably several viruses that can cause flaccid acute myelitis," said Dr. Samuel Dominguez, medical director of the Children & # clinical microbiology laboratory. 39; s Colorado Hospital. involved in Lydia's care.

"In the past, polio myelitis was one of the most common causes of flaccid acute myelitis, but fortunately we do not see polio in this country because of our vaccination program. But other viruses like enterovirus A71 and West Nile virus, the Japanese encephalitis virus, and we now think that the enterovirus D68 is probably also another cause of acute myelitis flabby, "said Dominguez.

"Depending on the virus that causes it, often it starts – if it is enterovirus D68 – it starts with a respiratory illness and fever, then, a few days later, children will have a fever or headaches and neck pain or pain in the arm or leg, which will cause a kind of weakness, so that they will not be able to move their arms or their leg, "he said. declared.

It was a nice day in August 2014 when Lydia started to cough, showing her first signs of illness.
However, her mother did not realize how serious Lydia's illness was until she saw her daughter playing the piano someday.

"She played very well with the right hand, then it was time for her to play her left hand, but instead of pushing the keys down with her left hand, she had her left hand in position, but she stretched out his right hand and used his right hand to push his fingers with his left hand on the keys, "said Pilarowski.

"I said," Well, Lydia, why are you doing this? Why do not you use your left hand to press these keys? And "Well, Mom, I can not. I can not play the piano with my left hand. That's kind of the first idea that there was really something wrong. "

According to the National Institutes of Health, there is no specific treatment for AFM, but the treatments that have been tried include immunoglobulin replacement therapy, corticosteroids, plasma exchange and treatment antiviral.

Physiotherapy and occupational therapy are particularly important during recovery. both helped Lydia heal.

"The muscular strength that she found directly in her affected arm seemed to her to come back on her own. The therapies really helped some of the surrounding muscles so that she could find new ways of doing things, and she certainly did. She discovered new ways of doing things, "said Pilarowski.

"The spectrum is wide, and Lydia is a little softer on the spectrum," she said about the AFM. Overall, she added, "I want to give the families hope at this time, because when we were in the midst of Lydia's acute illness, we did not know what was going to happen."