'This disease is a monster': Furious moms blast CDC for failing to act on mystery polio-like virus which has left hundreds of kids paralyzed since 2012, killed at least two and is now expected to hit unprecedented levels in 2020
Furious mothers of children who have been left partially disabled and fully paralyzed by the polio-like illness of Acute Flaccid Myelitis (AFM) have blasted the CDC for failing to act - and say they warned the organization that 2018 was going to be the worst year yet.
Several parents of children who were diagnosed with the illness up to four years ago have spoken to DailyMail. com and revealed their anger that more has not been done to educate doctors and stop the illness in its tracks.
This year the number of cases reached its highest yet with 341 children taken ill across 39 states - 186 of those cases have so far been confirmed with investigations underway on the rest.
That is a steady climb from the 35 confirmed in 2017, 149 in 2016, 22 in 2015 and 120 in 2014. The illness appears to surge every other year with every resurgence worst than the last.
More than 17 countries have reported the odd AFM case, however, only the US has biannual surges and now experts are warning ahead for 2020.
The disease has been likened to polio, which struck tens of thousands of children a year in the US before its vaccine was introduced in the 1950s. However, this virus is not thought to be responsible for the outbreaks.
It may be caused by the EV-D68 virus, which is a distant relative of polio and coincided with many cases in 2014.
CDC doctor Dr Ruth Lynfield calls EV-D68 'the leading hypothesis'. EV-A71, another polio relative, and rhinovirus are also suspects but no conclusions have been reached.
In past cases it has robbed children of the use of limbs but has also left many fully paralyzed and even in need of ventilators to breathe. At least two children have died.
Parents of those affected say many could have been saved in this year's outbreak if only the CDC had acted sooner to raise awareness of the condition.
And worryingly they say their actions still aren't good enough in the face of the outbreak which expects say will only be worse in the next expected wave of 2020.
Heather Werdal's son Hayden was stricken by AFM back in 2014 when he was just 13.
Within nine days from getting a cold he was paralyzed. Now four years on he can speak and move his right arm slightly but that is all and he is considered a quadriplegic.
'Up until this summer I don't think the CDC did anything,' she said from her home in Bremerton, Washington. 'I don't think they took it seriously. They said, 'We were so caught off guard when it happened'.
Are you freaking kidding me? Us parents have been talking about it for years and by the time the first cases were reported this year, we knew we were facing a bad year – that's what outraged us.'.
'We think there are a lot more cases that the CDC admits to or have officially diagnosed. We have over 600 affected parents on our parents board.'.
The parents want states to be forced to report cases and to have a protocol for handling those brought to the ER room displaying symptoms of the disease.
They saw too few doctors are aware of the possibility of AFM - let alone actively on the lookout for it.
Werdal also says that little has been done to study past cases - limiting the ability of scientists to even begin to find a cure.
'No one is following our children,' she said. 'How do you track a new disease and see what treatments work and recovery looks like when nobody is following our kids.'.
Angie Anderson's daughter Mckenzie was six when she fell ill with 'the sniffles' 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 flagged the possibility of AFM in her first call to the pediatrics office but the doctor had never heard of it.
She was told to stay home and monitor her daughter for what was likely a cold. Soon she lost control of all of her limbs and eventually her ability to breathe unaided.
'It has been so poorly handled,' she told DailyMail. com from their home in Albany, Oregon. 'I have been so frustrated and maddened. I thought after all these kids getting sick someone would have paid attention.
And It comes out of the blue so quick. But there was no information in the hospital - it's just all this garbage about Ebola.
They spend millions on all these other diseases but when it's 120 kids they say it's a drop in the bucket.
'Every other year it gets more and more serious. We kept telling people, '2018 is going to be a bad year', because every other year it gets worse and nobody listened. Nobody wanted anything to do with it.
'One kid is too many and these numbers are getting higher every year. This disease is a monster.'. In November, the CDC finally launched a task-force to look into the condition.
It will bring together experts to discuss the CDC's response to the outbreak and will make regular reports on what is being done.
Some parents were invited for a one-off meeting with the body - the first time the government body has officially met with them.
'I want to reaffirm to parents, patients, and our Nation CDC's commitment to this serious medical condition,' 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 working together to provide important answers and solutions to actively detect, more effectively treat, and ultimately prevent AFM and its consequences.
Katie and JP Bustamante's son Alex, 6, died in May after falling ill with AFM in 2016. Katie reveals that doctors were so badly briefed about the illness that they were searching the internet for answers on AFM.
Eventually the couple were the ones who ended up briefing medics from parent message boards about possibly ways to treat the condition. 'We had no idea what was happening and neither did the doctors,' Katie told Dailymail. com.
'They first suggested a stroke - but the tests did not support that. After a few days they had narrowed it down to AFM or Transverse Myelitis, neither of which we had heard of.
It took over a week for them to determine that it was AFM. I think the PICU doctors were very puzzled and really had no idea what to do other than treat the symptoms.
There was an intelligent, well rounded team of doctors, but there just wasn't any information available. They were searching on the internet for answers.'.
I was shocked to know that it had been around for four years prior to Alex's diagnosis. When I tried to do my own research, there was nothing from the medical community available. Nothing.
'I believe that the CDC has finally jumped to attention. But it took the AFM families reaching out to the media to get there.
Also, I think that we need more than just the CDC; there needs to be substantial research to find out what is causing AFM and how to treat and prevent it.
Other groups need to be involved and I hope to see that happen. 'Once Alex told me he couldn't use his thumb, I called our hospital and we were on our way to emergency within the hour.
I wish I had known about some of the acute phase treatments that were successful for other families. 'He may have had somewhat of a chance. You assume the ICU doctors know what they're doing.
I wish I could have found the parents' Facebook group right away because frankly, that's where most of our treatment ideas were taken from, and then we would present them to our doctors and seek out the physicians that were aware of them.
'After about four months we started to realize that we knew more about AFM than the doctors. Alex was training them.'. The couple are now part of the AFM Association Afmanow. org alongside Heather Werdal.
WHAT IS ACUTE FLACCID MYELITIS (AFM)?. The term 'myelitis' means inflammation of the spinal cord.
Transverse myelitis is the broad name of the disease, and there are various sub-types. It is a neurological disorder which inflames the spinal cord across its width ('transverse'), destroying the fatty substance that protects nerve cells.
That can lead to paralysis. AFM is an unusual sub-type of transverse myelitis.
Patients starts 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 limp, while patients with general transverse myelitis tend to be rigid.
Most AFM patients start to struggle with movement of the limbs, face, tongue, and eyes. They then begin to lose control of one limb or sometimes the whole body - though many maintain control of their sensory, bowel and bladder functions.
Unlike transverse myelitis, which has been around for years, doctors are still in the dark about why and how AFM manifests itself. WHAT IS ACUTE FLACCID MYELITIS (AFM)?.
The term 'myelitis' means inflammation of the spinal cord. Transverse myelitis is the broad name of the disease, and there are various sub-types.
It is a neurological disorder which inflames the spinal cord across its width ('transverse'), destroying the fatty substance that protects nerve cells. That can lead to paralysis.
AFM is an unusual sub-type of transverse myelitis. Patients starts 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 limp, while patients with general transverse myelitis tend to be rigid. Most AFM patients start to struggle with movement of the limbs, face, tongue, and eyes.
They then begin to lose control of one limb or sometimes the whole body - though many maintain control of their sensory, bowel and bladder functions.
Unlike transverse myelitis, which has been around for years, doctors are still in the dark about why and how AFM manifests itself.
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