Furious mothers of children, who have remained partially disabled and are completely paralyzed by the polio-like disease of Acute Flaccid Myelitis (AFM) sweeping the country, have accused the CDC of negligence – and say they warned them that 2018 went to be the worst year so far.
Several parents of children diagnosed with the disease up to four years ago have spoken to DailyMail.com and have revealed their anger that no more has been done to educate physicians and keep the disease on its way.
This year the number of confirmed cases reached its peak, with 341 children ill in 39 states – 186 of these cases have so far been confirmed with ongoing studies on the remainder.
That is a steady climb of the 35 confirmed in 2017, 149 in 2016, 22 in 2015 and 120 in 2014.
The disease seems to rise every two years with every recovery that is worse than the previous one.
More than 17 countries have reported the odd AFM case, but only the US have semi-annual peaks and now experts are calling for 2020.
Parents of children with AFM met on November 13, 2018 with the deputy director of the CDC, Dr. Anne Schuchat, and other officials in Washington to discuss ways to improve AFM reporting across the country.
Angie Anderson & # 39; s daughter Mckenzie (pictured) was six when she fell ill from the Sniffles & # 39; just before Christmas in 2014, which turned out to be AFM
Mckenzie is shown in her hospital bed. In the past, the disease has deprived children of the use of limbs, but also requires many paralyzed and even breathing apparatus to breathe.
The disease was compared with polio, which in the US affected tens of thousands of children a year before the vaccine was introduced in the 1950s. However, it is not thought that this virus is responsible for the outbreaks.
It can be caused by the EV-D68 virus, which is a distant relative of polio and coincided with many cases in 2014.
Dr. CDC doctor. Ruth Lynfield calls EV-D68 & # 39; the leading hypothesis & # 39 ;. EV-A71, another polio friend and rhinovirus are also suspects but no conclusions have been drawn.
In previous cases, it has deprived children of limbs, but it also requires many paralyzed and even respiration equipment. A handful of children died.
Parents of those children say that many could have been saved if only the CDC had acted earlier to increase the awareness of the condition.
And, alarmingly, they even now say that their actions are not good enough in the light of the terrifying outburst that it expects will only get worse in the next expected wave of 2020.
Heather Werdal & # 39; s son Hayden was hit by the AFM in 2014 when he was only 13 years old. He was paralyzed within nine days after a cold. Now, four years later, he can speak and move his right arm slightly, but that is all and he is considered a quadriplegic
Hayden is pictured with friends during his stay in the hospital. We think that there are many more cases that the CDC recognizes or has officially diagnosed. We have more than 600 affected parents on our parents' sign, & # 39; said Hayden's mother
Hayden's mother also says that little has been done to study previous cases – limiting the ability of scientists to find even a cure. Hayden is pictured above
WHAT IS ACUTE FLACCID MYELITIS (AFM)?
The term & # 39; myelitis & # 39; means inflammation of the spinal cord.
Transverse myelitis is the broad name of the disease and there are several subtypes.
It is a neurological disorder that burns the spinal cord across the width (& transverse), destroying the fat that protects the nerve cells.
That can lead to paralysis.
AFM is an unusual subtype of transverse myelitis.
Patients start with the same spinal inflammation, but their symptoms are different and the disease develops differently.
The main distinction is that AFM patients are weak and weak, while patients with general transverse myelitis tend to be rigid.
Most AFM patients begin to struggle with movement of the limbs, face, tongue and eyes.
They then begin to lose control of one limb or sometimes all over the body – although many retain control over their sensory, bowel and bladder functions.
In contrast to transverse myelitis, which has existed for years, doctors are still in the dark about why and how AFM manifests itself.
Heather Werdal & # 39; s son Hayden was hit by the AFM in 2014 when he was only 13.
He was paralyzed within nine days after a cold. Now, four years later, he can speak and move his right arm slightly, but that is all and he is considered a quadriplegic.
"Until this summer, I do not think the CDC has done anything," she said from her home in Bremerton, Washington.
& # 39; I do not think they took it seriously. They said: & # 39; We were so surprised when it happened & # 39 ;. Are you making fun of me? Our parents have talked about it for years and by the time the first cases were reported this year, we knew we were facing a bad year – that is what disgusts us. & # 39;
We think that there are many more cases that the CDC recognizes or has officially diagnosed. We have more than 600 parents involved in the management of our parents. & # 39;
The parents want states to be forced to report cases and to have a protocol for handling those who are brought to the ER room with symptoms of the disease. They saw that too few doctors are aware of the possibility of AFM – let alone that they are actively looking forward to it.
Werdal also says that little has been done to study previous cases – to limit scientists' ability to find even a cure.
& # 39; Nobody follows our children, & # 39; she said. & # 39; How do you follow a new disease and see how treatments work and recovery looks like nobody follows our children? & # 39;
Hayden is pictured above with his family before he became ill. Hayden's mother (right) says that little has been done to study previous cases – to limit scientists' ability to even find a cure
& # 39; Nobody follows our children, & # 39; she said. & # 39; How do you follow a new disease and see how treatments work and recovery looks like no one is following our children, & # 39; said Hayden's mother. Hayden is shown in his hospital bed
Angie Anderson & # 39; s daughter Mckenzie was six when she fell ill from the Sniffles & # 39; just before Christmas in 2014.
Within 12 days she was a quadriplegic completely paralyzed from the neck down with a machine to breathe for her.
Her mother identified the possibility of the AFM in her first appeal to the paediatrics office, but the doctor had never heard of it.
She was instructed to stay at home and check her daughter for what was probably a cold. Soon she lost control of all her limbs and eventually her ability to breathe without help.
& # 39; It is handled so badly ;, she told DailyMail.com from their home in Albany, Oregon.
& # 39; I've become so frustrated and crazy. I thought that after all these children who would get sick, someone would have paid attention. And it comes out of the sky so quickly. But there was no information in the hospital – it's just all this waste about ebola. They spend millions on all these other diseases, but when they are 120, they say it's a drop in the bucket.
& # 39; Every year it gets more and more serious. We kept telling people that & # 39; 2018 will be a bad year & # 39 ;, because it gets worse every year and nobody listens. Nobody wanted to have anything to do with it.
Within nine days of receiving a cold, Hayden (photo) was paralyzed. Now, four years later, he can speak and move his right arm slightly, but that is all and he is considered a quadriplegic
& # 39; One child is too much and these numbers are getting higher every year. This disease is a monster. & # 39;
In November, the CDC finally launched a task force to look at the situation.
It will bring together experts to discuss the CDC's response to the outbreak and will report regularly on what is being done.
Some parents were invited to a one-off meeting with the body – the first time the government body officially met them.
I want to reaffirm the involvement of parents, patients and our nation-CDC in this serious medical condition, & # 39; said CDC director Robert Redfield, MD, in a press release.
This Task Force will ensure that the full capacity of the scientific community is engaged and collaborated to provide important answers and solutions for active detection, more effective treatment and eventual occurrence of AFM and its consequences. & # 39;
Katie and the son of JP Bustamante, Alex, 6, died in May after they became ill from the AFM in 2016. Katie shows that doctors were so badly informed of the disease that they were looking for answers to the AFM
We had no idea what was going on and the doctors did not, & # 39; Alex & # 39; s mother told Katie to Dailymail.com. Alex is pictured above
Katie and the son of JP Bustamante, Alex, 6, died in May after they became ill with the AFM in 2016.
Katie shows that doctors were so badly informed of the disease that they were looking for answers to AFM.
In the end, it was couples who eventually informed doctors of the motherboards about possible ways to treat the condition.
We had no idea what was going on and the doctors did not, & # 39; Katie told Dailymail.com.
& # 39; They first suggested a stroke, but the tests did not support it. After a few days they had reduced it to AFM or Transverse Myelitis, neither of which we had heard. It took more than a week before they had established that it was AFM. I think the PICU doctors were very surprised and really had no idea what to do except to treat the symptoms. There was an intelligent, well-rounded team of doctors, but there was simply no information available. They were looking for answers on the internet. & # 39;
I think the PICU physicians were very surprised and really had no idea what to do except treat the symptoms. There was an intelligent, well-rounded team of doctors, but there was simply no information available. They searched for answers on the internet, "said Alex's mother Katie. Alex is pictured above
& # 39; I was shocked to know that it existed four years before Alex's diagnosis. When I tried to do my own research, there was nothing available from the medical community. Nothing.
I believe that the CDC has finally come to the attention. But it took the AFM families to reach the media to get there.
& # 39; After about four months we began to realize that we knew more about the AFM than the doctors. Alex trained them, "said Alex's mother, Katie. Alex is pictured above before he became ill
& # 39; I also think we need more than just the CDC; Substantial research must be done to find out what causes the AFM and how it should be treated and prevented. Other groups must be involved and I hope this will happen.
When Alex told me that he could not use his thumb, I called our hospital and we were on our way to an emergency within an hour. I wish I had known about some of the acute phase treatments that were successful for other families.
& # 39; He might have had a chance. You assume that the ICU doctors know what they are doing. I wish I could have found the parents' Facebook group right away, because frankly, most of our treatment ideas were taken from there, and then we would present them to our doctors and visit the doctors who were aware of it.
& # 39; After about four months we began to realize that we knew more about the AFM than the doctors. Alex was training them. & # 39;
The couple is now part of AFM Association Afmanow.org alongside Heather Werdal.
DailyMail.com contacted the CDC for further comments.