Mother of boy who had mysterious symptoms speaks out

The boy who was exhibiting symptoms of a rare polio-like illness before he died was unable to cry, his mother says.

Marijo Deguzman says her son, Daniel, was taken off life support on Monday.

“He woke up, and looked at me. And he started crying. But his tear ducts, he couldn’t cry,” Deguzman told CBS. “His brain wasn’t letting him cry.”

Daniel was one of nine children to come down with symptoms similar to acute flaccid myelitis, or AFM. Two of those children have been confirmed to have AFM, a very rare illness that attacks the spinal cord and brain. Health officials have not confirmed that’s what Daniel had.

The state health department and the CDC are investigating the cluster of illnesses in our state.

Three children remain hospitalized and five were released as of Friday.

Symptoms of AFM typically include sudden weakness in one or both arms or legs, along with loss of muscle tone and decreased or absent reflexes.

The exact cause of AFM is unknown, though many viruses and germs, including common germs that cause colds and sore throats, are linked to the condition.

“At this point, there isn’t evidence that would point to a single source of illness among these cases,” Dr. Scott Lindquist, state infectious disease epidemiologist, said in a health department statement. “However, this investigation is just getting underway and we’re looking at all possibilities as we try to understand what might have contributed to these illnesses.”

The children were admitted to the hospital with a range of types and severity of symptoms, but all had a loss of strength or movement in one or both arms or legs.

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Three of the children were from King County, one was from Pierce County, two were from Franklin County, one was from Snohomish County and the remaining two were from Whatcom County.

Three of the nine children are still hospitalized at Seattle Children’s Hospital.

There were no cases of AFM reported in Washington state last year. In 2014, there were two. There have been more than 50 cases of AFM in 24 states across the United States this year.

>> Related: Parents warned about rare illness that can leave kids paralyzed

Below are common questions and answers provided by the State Department of Health:
Q: What is acute flaccid myelitis (AFM)?

A: AFM is a rare condition with sudden onset of weakness of one or more limbs, sometimes accompanied by weakness of the muscles of the face and eyes.  In severe cases, the breathing muscles can be involved. In all cases, there are distinctive lesions in certain areas of the spinal cord seen with an MRI.

• Symptoms of AFM vary in severity and range from mild weakness of a limb to absence of movement in all limbs.

• Unlike most other diseases, suspected AFM are only reports.

• The cases receive a final classification as confirmed or probable AFM, or are ruled out, only following a review by expert neurologists from the Centers for Disease Control and Prevention.

Q: How common is AFM?

A: AFM is quite rare. Last year, Washington state had no cases, and in 2014 there were only two, so this number of suspected cases within about a six-week time span is unusual. Clusters similar in size to the one we are currently seeing have happened elsewhere in the US, for example, in Colorado and Arizona.

Even with an increase in cases in 2016, AFM remains a very rare disease. Less than one in a million people will ever develop it.

Q: What causes AFM?

A: AFM can be caused by a variety of germs, such as enteroviruses, which typically cause milder illness in children such as respiratory infections. Other causes may be West Nile Virus, autoimmune disease or environmental toxins. For most reported cases across the US, the cause has not been identified.

It can also be mistaken for conditions that cause inflammation of the nerves such as transverse myelitis and Guillain-Barré syndrome.

However, when enteroviruses get into the central nervous system, they can cause more serious illnesses like inflammation of the brain. Polio virus, which is not being considered as the cause of these children’s illnesses, is a cause of AFM that is rare now in the US due to vaccination.

Q: Do you know what caused any of these potential cases?

A: At this point we do not know what has caused these potential AFM cases.

• Oftentimes, despite extensive laboratory testing, a cause for AFM is not able to be identified.

• It’s not known why some people develops AFM while others don’t.

Q: Is AFM contagious?

A: AFM is a syndrome, which is basically a group of symptoms caused by many different things. Many of the germs that cause AFM are contagious, such as enteroviruses, which typically cause milder illnesses in children such as respiratory infections. Enteroviruses can get into the central nervous system and cause more serious illnesses like inflammation of the brain, although this is uncommon.

• Some of the germs known to cause AFM are contagious between people while others are not. WNV for example is only transmitted by mosquitos while common cold germs are transmitted between people. Most to these infections do not result in AFM.

Q: Are these cases connected to each other?

A: At this point we don’t know if these cases are connected in any way.

• They came from four different counties (Whatcom, King, Pierce and Franklin).

• Their age ranges between 3 to age 14.

• And while we can’t discuss specific cases, some have unique symptoms from the others.

Q: Could this be something else?

A: AFM is one of a number of conditions that can result in neurologic illness with limb weakness. Such illnesses can result from a variety of causes, including viral infections, environmental toxins, genetic disorders, and an abnormal immune response that attacks the body’s nerves.

Q: How is AFM diagnosed?

A: AFM is difficult to diagnose because it can look nearly identical to other conditions or syndromes. It is diagnosed based on a combination of symptoms and a type of imaging test called an MRI or laboratory results.

A doctor can rule out other neurological disease by careful examination, for example, looking at the location of muscle weakness, muscle tone, and reflexes. An MRI is essential to diagnose AFM.

Q: Can Adults Get It?

A: Yes, but it may be more likely to affect children, perhaps because they typically haven’t built up as much immunity to germs as adults.

Q: Is there a treatment?

A: There is no specific treatment for acute flaccid myelitis, other than what doctors call supportive care, treating symptoms. A doctor who specializes in treating brain and spinal cord illnesses (neurologist) may recommend certain interventions on a case-by-case basis.

Q: Do people who get it get their movement back?

A: According to the CDC some do. The CDC did a survey of patients from cases in 2014 investigation and got 56 responses. A small number had complete recovery of limb function after about 4 months, but some had no improvement.

• Right now there is no long-term information is available, but the CDC is working with states to collect the information.

Q: Is there any way to prevent it?

A: Because being infected by any one of a number of viruses are possible causes of AFM, steps to avoid infections include good hand washing and avoiding contact with people with respiratory and diarrhea infections may help.

AFM can be caused by different things, and because doctors know so little about the cause, there are no known specific preventative measures to recommend.

• You can help protect yourselves from some of the known causes of acute flaccid myelitis by:

• Washing your hands often with soap and water,

• Avoiding close contact with sick people, and

• Cleaning surfaces with a disinfectant, especially those that a sick person has touched.

Q: What is the investigation looking at?

A: We’ve worked to make sure that tests are being done that might point to a cause – these tests are now being reviewed by us and the CDC and we hope to have some preliminary information back soon.

• We are investigating whether the cases have any links to one another and are reviewing other information including if they had recent illnesses.

• While the types of tests are really comprehensive, sometimes no direct cause is found.

KIRO 7 contributed to this story

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