If you're a parent, you may already know about the disturbing uptick in an illness that causes paralysis and weakness in young children.
The disease, called acute flaccid myelitis, is rare, but it usually pops up in young, healthy children. There is no cure for the illness, but doctors continue to find new ways to give kids back some of what they've lost.
Nine-year-old Brandon Noblitt is an expert on patience.
It's a skill he had to learn young. Three years ago, his life took an unexpected turn.
"I tried to get out of bed and I just collapsed," Brandon said.
"He was perfectly healthy before. Never really had anything, any serious diagnosis or any serious health problems. He was … normal," recalled Brian Noblitt, Brandon's dad.
An MRI revealed he had acute flaccid myelitis, an illness with symptoms similar to those of polio, causing sudden paralysis. It's rare but often pops up after an infection like the common cold.
"I was thinking, 'Wow, what if – what if I never get better?'" Brandon said.
Brandon had to adjust to life in a wheelchair. But nerve surgeon Dr. Amy Moore was determined to get him out of it.
"The humanism of it – it hurts, because these are normal kids," Moore said.
In a surgical first for AFM, Moore transfers less important nerves from one part of the body to help the paralyzed leg.
"We can cut it and remove it and re-suture it under a microscope and at a millimeter a day, inch a month, foot and a half a year, we get muscle function," she said.
It was a long wait, but eventually, Brandon's patience paid off. His leg muscles started to quiver.
"It was a sense of celebration. A sense of that, 'Wow this is really starting to happen,'" Brian Noblitt said.
"I'm not making them normal but waking up muscles to make them stronger so they can stand and so that they can walk," Moore said.
She said it can take four years to get the full effect.
Brandon doesn't mind waiting. He's just glad to be out of his wheelchair.
"I feel like I'm still getting better. I feel great. I can keep up with my friends and everything," Brandon said.
Moore has treated 13 children, with 10 more scheduled over the next two months. Three of those children are now out of a wheelchair and walking like Brandon. Others are regaining mobility, and the hope is they will continue to improve with time.
Since 2014, there has been an uptick in AFM cases every other year.
TOPIC: BRANDON'S NERVE TRANSFER SURGERY FOR AFM IS A FIRST!
REPORT: MB #4571
BACKGROUND: Acute flaccid myelitis is a rare condition that happens mainly in children which affects the nerves in the spinal cord. This condition can cause sudden acute weakness in the arms or legs. It can also include other symptoms, such as loss of muscle tone and decreased reflexes. Some people feel pain. The main symptoms include facial weakness, drooping of the eyelids, and difficulty swallowing, speaking, or moving eyes. In severe cases, respiratory failure happens if there is weakness in the muscles involved with breathing. Symptoms of AFM tend to develop after viral infections, such as West Nile virus, adenovirus, and poliovirus. However, there is no clear cause found in some cases. Diagnosing this condition can be challenging as the symptoms resemble those of other neurological diseases. Therefore, when diagnosing, doctors may conduct a physical exam, MRIs of the spine, tests of the cerebral spinal fluid, and tests checking patient's nerve speed and the response of muscles to messages from the nerves. (Source: https://rarediseases.info.nih.gov/diseases/13142/acute-flaccid-myelitis)
TREATMENT: To prevent infections by AFM-related viruses, it is recommended that people keep their polio vaccines up-to-date and to avoid exposure to mosquitoes by using mosquito repellent and not being outdoors at times where mosquitoes are more likely to be out, such as dusk and dawn. If doctors suspect acute flaccid myelitis, you may be treated by neurologists as they are trained in nervous system conditions. There is no specific treatment for this condition and there is no clear evidence that any treatments tried in the past, such as immunoglobulin, corticosteroids, plasma exchange, and antiviral therapy have affected recovery. Treatments that may help may vary based on symptoms. There are no specific therapies targeted to AFM, but physical therapy and occupational therapy are recommended as it can help improve weakness during recovery. It is important to keep in mind that very few people have made a full recovery, in fact, most people continue to have muscle weakness after a year. Because this condition is very rare and there is no specific treatment for it, its long-term outcomes are also unknown. (Source:https://www.mayoclinic.org/healthy-lifestyle/childrens-health/expert-answers/acute-flaccid-myelitis/faq-20441802)
CAPTURE: Collaborative Assessment of Pediatric Transverse Myelitis: Understand, Reveal, Educate is a study led by Dr. Benjamin Greenberg in Dallas, TX. The study is the first of its kind and is in collaboration with several health care centers across North America. The study determines the current state of Pediatric TM (including AFM or acute flaccid myelitis). It will eventually lead to a better understanding of the condition as well as information on diagnosis, treatment, and outcomes, which can lead to specific treatment and technology in the future. Participation is online only. It includes a survey at different times after being diagnosed, as well as a review of treatment records. (Source:https://myelitis.org/clinical-studies-and-trials/capture-collaborative-assessment-of-pediatric-transverse-myelitis-understand-reveal-educate/#tab-id-1)