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Stanford physician leading efforts to track emerging polio-like illness in California children

Stanford physician leading efforts to track emerging polio-like illness in California children

Sofia JarvisJessica Tomei remembers the exact moment her daughter’s arm stopped functioning.

It had been a rough week. Sofia Jarvis, Tomei’s then-two-year-old, had been sick with a respiratory illness. Tomei and Sofia were leaving the pediatrician’s office with a pneumonia diagnosis and a prescription for antibiotics when, on the way out, Sofia reached for a toy.

“Her left arm, in mid grasp, stopped working,” Tomei said.

The next day, when Sofia was still not using her arm, Tomei and husband Jeff Jarvis took her back to the doctor. An MRI showed a lesion in Sofia’s spinal cord. At first, she was diagnosed with transverse myelitis, a form of paralysis from which some patients recover. But when the family eventually found their way to pediatric neurologist Keith Van Haren, MD, at Lucile Packard Children’s Hospital Stanford, he had bad news.

“Dr. Van Haren immediately said, ‘She probably will not get back the function of her arm,’” Tomei recalled.

Sofia’s case fit into a pattern that Van Haren and other neurologists around California had begun to observe: Since late 2012, about 20 children in the state have developed sudden-onset, permanent paralysis that looks similar to polio. Van Haren is the primary author of an abstract that describes five of the cases, which will be presented at the annual meeting of the American Academy of Neurology, April 26 to May 3 in Philadelphia.

From an AAN press release about the abstract:

“Although poliovirus has been eradicated from most of the globe, other viruses can also injure the spine, leading to a polio-like syndrome,” said case report author Keith Van Haren, MD, with Stanford University in Palo Alto, Calif. and a member of the American Academy of Neurology. “In the past decade, newly identified strains of enterovirus have been linked to polio-like outbreaks among children in Asia and Australia. These five new cases highlight the possibility of an emerging infectious polio-like syndrome in California.”

All five of the children in the report, including Sofia, had been immunized against polio. Two others in addition to Sofia had respiratory symptoms before the paralysis began. In two of the children, the physicians found evidence of infection with enterovirus-68, which is from the same family as polio virus. Although the team suspects this form of paralysis is infectious, they have not completely excluded other causes such as autoimmune disease. They are asking other physicians to report similar cases to the California Department of Public Health so that the cause of the disease can be pinpointed.

One concern, Van Haren added, is that physicians who have not heard of the new disease may make the same misdiagnosis of transverse myelitis that Sofia received, giving affected children and their families unrealistic expectations about the likelihood of recovery.

“The MRI can look similar but the clinical exam is very distinct,” he said. “There’s a knee-jerk reaction to just call it transverse myelitis. This is something else, and it’s quite bad.”

The good news is that the disease is very rare and likely to remain so. “There have been similar reports in Southeast Asia for many years, and the disease has rarely reached epidemic proportions there,” Van Haren said. “We want to temper the concern about this. It is not a massive epidemic.”

Meanwhile, families like Sofia’s will be watching closely to see what is uncovered by the upcoming research.

“We really want to know what caused this,” Tomei said, adding that the disease and a string of attempted treatments have been difficult for Sofia to go through. Now four, Sofia is generally healthy, but her arm is still paralyzed and the muscles have begun to atrophy.

Still, the family is keeping a positive outlook. Said Tomei, “We’re lucky it was just her left arm.”

Photo courtesy of Jessica Tomei and Jeff Jarvis

13 Responses to “ Stanford physician leading efforts to track emerging polio-like illness in California children ”

  1. Claire Says:

    It’s probably an outbreak of enterovirus-71, which also happened in California in 1969. probably before many, including reporter, born.
    Anyway, same symptoms of respiratory and paralysis(which may be permanent. Not a new virus. I wonder though, if the outbreak is related to the drought/dust/dirt. Lots of nasty things brought out from Dust Bowl era, so not really surprised at this. There are no coincidences in life.

  2. Barbara Lightner Says:

    My 90 year old father, a WWII veteran to Guadalcanal, developed onset of left arm weakness last spring after insertion of pacemaker, removal of infected gallbladder, massive blood loss with severe anemia and replacement to hgb of 9. Within weeks, he complained of not being able to raise his left arm. He recalled he was told not to lift his arm for 6 weeks after the pacemaker insertion, so Concerns were dismissed. Months later, the weakness/ paralysis in not being able to lift his left and now his right arm continues, despite physical therapy. His physical therapist thinks there is nerve damage, but the physicians aren’t pursuing neurological evaluation. I am wondering if Dad has been carrying this SE Asian virus since his WW II days. Post op the chole, he developed a recurrence of jungle rot on his groin area. Could his current arm limitations, be related to activation of a latent virus just as you’re seeing in the children? I have requested neurological eval of my father when he has been hospitalized, but the hospitalists have discharged him to a nursing rehab center. He is to return to home soon.

  3. Shideh Says:

    I am sure that the samples from these cases are run through the most advance databases. But just a thought that this might be another trick out of sleeves of TICKS: Tick paralysis caused by neurotoxin. Unfortunately, our impression from media is that researchers are too narrowly focusing on viruses.
    Please dismiss if above possibility has already been ruled out. Good luck on your search.

  4. Angela Pace Says:

    My initial thought was, perhaps, this sad polio-like illness is a consequence of Fukushima. It is ironic that the cases I have read about are found in people whom reside in California, Asia, and Australia. Coincidence or connection?

  5. Brenda Says:

    I’m curious to know what the differences are in the clinical exam of this illness and Transverse Myelitis. As I’ve been reading about it, there are a lot of similarities between this and when my 13 year old son was diagnosed with TM in 2006. He had a minor virus infection shortly before the onset as well. Although he had some great improvements, he will never be able to run and has many lingering effects of the TM.

  6. heather white Says:

    I have been interviewing teenagers in the hospital paralyzed w/ n-hexane poisoning. The symptoms are the same as described. The product is ubiquitous in the manufacture of cellphones and all electronic gadgets. The effect on consumers has been unverified.
    I hope the MD’s are testing for n- hex which can be cured with treatment over the course of a year.

  7. Mary Says:

    8 years ago: child had first and only asthma attack. 911 was called and ambulance took to hospital. While there, same day, her legs suddenly be ams too weak to support her . It lasted about 3 weeks, but she recovered fully. She took no medicine other than nebulizer in the ambulance. She does not have asthma or health concerns today. Tm was discussed, but not diagnosed. Some drs thought it was imagined of somataform. But that seemed and seemed far fetched. I have always wondered about those weeks as there never was a good answer. Grateful it was not permanent for her.

  8. H.Craig Says:

    Could this have any links to India’s NPAFP, non-polio associated flaccid paralysis which seems to be an epidemic attributed to polio vaccine. I know it is taboo to discuss the possiblity of molecular mimicry by vaccines but, it seems to be the best hypothesis going. If it is, I’d bet that 5 weeks of continuous high levels of ibuprophen might help (as it does for prostatitis).
    Is there a genetic link (MHC or TCR perhaps) between these patients?? Is there a link between the formulation of their polio vaccine (and perhaps that of the patients in India)? Have they inadvertantly had multiple exposures to polio or polio vaccine? or to polio and enterovirus?

  9. Debra Says:

    I was diagnosed with ideopathic transverse myelitis in 2010. Subsequently, with many evolving symptoms I was diagnosed with Lyme disease. Lyme is a bacterial infection and typically starts with flu-like symptoms which can also include respiratory illness. Looking at the tall grasses surrounding the child in the photograph, tick-borne disease should be in any differential diagnosis. California is endemic for Borrelia burgdorferi, Borrelia bissetti and Borrelia miyamotoi. Lyme two-tier serology only tests for one single strain of B burgdorferi and will miss many other strains and species. B. miyamotoi would require a different form of testing completely, (GlpQ). It seems that physicians are too quick to say virus and use that as a reason to not treat someone without looking more deeply into the cause. Lyme disease was originally called a “virus” and it took until 1982 to determine that it was a bacterial infection.

  10. Amy Beaver Says:

    My 20 year-old daughter had a stomach virus 2010 for 4 days fever 103.9 3 weeks later lost the use of her legs for 3 weeks. Was thought to be GB. Feet reflexes came back first so then was thought to be transverse myelitis but no lesion found. Recovered with physical therapy. Then 3 months later had the flu, 11 days later lost the use of her legs again for 2 weeks. No lesion seen again. This has happened multiple times after febrile illnesses. No answer found yet. Pattern is fever/ 10-14 days/proximal weakness for 2-3 weeks/resolution… been to psychologist for conversion disorder work up…. No evidence found… Still seeking answers

  11. Amy Beaver Says:

    My now 25 year-old daughter has had recurrent proximal weakness following febrile illnesses since 2010 without any diagnosis, it does go away spontaneously but does cause her to go into a wheelchair for a week or two each time… could this be related?

  12. Amy Beaver Says:

    25 year-old daughter with febrile illness followed by proximal weakness no diagnosis yet. Could this be something similar? Hers is chronic and recurrent; however, she recovers from the proximal weakness each time…. Started in fall of 2010.

  13. Jesse Says:

    “Could this have any links to India’s NPAFP, non-polio associated flaccid paralysis which seems to be an epidemic attributed to polio vaccine”. Good point. I’m told that, as a side effect, it often affects the injected arm. It does make one curious about the young child’s vaccination schedule and whether her recent innoculations were to the arm in question (though I’m sure due to current anti-antivax hysteria, no one dares voice these questions when assessing such cases).


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