Mysterious illness that paralyzes healthy kids prompts plea from CDC | Hacker News Reader

Mysterious illness that paralyzes healthy kids prompts plea from CDC

arstechnica.com

244 pointssmacktoward82 comments

Medical 'anomalies', while sad and terrible in some cases, can also be fascinating.

I was seven in the summer of '94 and woke up one day with a completely immobile left leg. My sister came into the bedroom to relay a message from mom that if I didn't stop playing games and get ready for school, then I'd be in trouble. However, I simply couldn't move my left leg.

The rest of the week I spent at home. Whenever I needed to walk somewhere, I'd just hop on my right leg, and drag my left leg along with me.

That week I saw a number of doctors and specialists. Had the battery of tests and diagnostics that are de rigeur for anything where the medical community has no clue what is going on.

Within roughly seven days from the onset of this temporary paralysis, my leg began functioning again and did so quite quickly.

Don’t leave us hanging!

Did you/your parents/the doctors ever figure out what was going on? Or did you just chalk it up to a fluke, hoping it would never return?

My 5 y/o was unable to walk for a day or two last year. Diagnosed with this:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5429052/

No one ever figured it out. Obviously, I hope it never returns or if it does that only lasts a week;)

I had a very similar thing happen to me in the late 80’s when I was 5. I remember getting out of bed and falling to the ground as I couldn’t feel my legs. I lost function of both legs and couldn’t walk, my parents brought me into doctors and specialist and they had no answers. Less than a week later I regained feeling and function of both my legs like nothing ever happened. I don’t recall having a fever.

I actually forgot that happened to me until your story just now. Crazy.

I read long ago that a large percentage of people experience temporary paralysis with no traceable cause. Of course I don't remember where I read it.

The writer Mary Shelley's arm suddenly became paralyzed when she was a teenager. After several months the paralysis went away.

Check my comment below about myositis, it's most likely what you had!

I get why you would get this during an infection, but why a week or two after an infection?

Same thing happened to me around that age as well except it was only for a few days...

It's highly likely that you had myositis. It usually happens as a response to an underlying infection. The body's immune response is such that it destroys muscle tissue, typically the calves, sometimes the heart.

My 6 years old son had it earlier this year and we were lucky enough that they detected a flu infection (he had no symptoms at all!) as a consequence of standard hospital tests, after being without answers for 12 hours. With that clue the doctors then were able to infer myositis from further blood tests. I never imagined you could have flu without symptoms!

He was back walking and running a week later, as soon as the muscles regenerated.

No, from the description myositis is highly unlikely. He claims his leg was paralyzed completely, not just the calve. Also rapid onset, no phase of "weakness", equally rapid recovery of function is inconsistent with significant muscle destruction. OP didn't report pain, or changes in perception and sensitivity, but I suspect the latter might have taken place.

I'd pick something neurological. Diagnostics involve a lot of poking with needles and electric stimulation, much like you would debug a circuit.

Does the muscle work when stimulated directly? Does it do something it shouldn't while not stimulated (spasmic activity). Do the nerves leading to the affected muscle conduct direct stimulation? Are relevant reflexes working?

Today you'd probably also use an MRI do rule out lesions in the brain and spinal chord. And still, after all of that you might not find anything really "wrong", which often is a good sign.

One case I witnessed had virtually no motor function behind the hips, and no control over bladder release and completely recovered within one or two weeks without significant intervention.

Unfortunately the owner didn't want to pay for an MRI, but the dog, which had a long history of coagulation problems anyway, probably experienced some kind of bleeding somewhere in the spine. Such "vascular" causes typically happen and unhappen that quickly.

One acronym is VITAMIN-D: Vascular, Inflammation, Traumatic, Anomaly, Metabolic, Infection, Neoplastic and Degenerative.

My son went through something similar with what looked like an infection that was slow and then progressed rapidly.

His legs and one hand had swollen and to keep his spirits up I brought in my NES classic that he promptly played even with just one hand. He also couldn't walk due to the swelling.

Doctors could not figure it out, as quickly it was decided it wasn't an infection, but tests gave no indication of anything wrong in any way. They took a lot of blood and did a lot of testing sometimes because they assumed that there had to be something, but everything testing looked normal.

The doctors were really concerned when it moved ever closer (extremely rapidly, you could easily chart changes in 5min intervals) to his head and torso and the fact that it mysteriously "jumped" limb to limb.

There were weird clues that weren't useful clues like how it would start on each leg in the same place, same with arms, and looked the same to start like a bug bite... but didn't look like a bug bite later. During the days he was in the hospital we turned in all our clothes, his bed sheets / blankets and had our house searched for any kind of bedbug, or any kind of bug. We moved rooms and they searched those blankets sheets / the room for anything, nothing found.

They were ready to load him on a helicopter to head to the university... where they told us "we still don't know what to do, but if there are complications we can handle those better at the university". Not encouraging, but I did like their honestly.

Then.....it just stopped and faded away as quickly as it started.

The assumption is that it was an unusual allergic reaction that wasn't well understood.

> Medical 'anomalies', while sad and terrible in some cases, can also be fascinating

I developed some kind of lump near the top of one of my butt cheeks. It was quite a bit denser than the surrounding tissue and it pointed up in a way that it could have been used as a hook to hang a hat on, if for some reason I was naked and needed to carry an extra hat around.

My doctor didn't know what it was, and sent me to have a biopsy. The biopsy showed that it was not cancerous.

It was way too big for my doctor to consider removing, and he sent me to a surgeon to see if she could remove it in her office. She said it was too big for that, and it would need to be done in a hospital. She also had no idea what it was.

Next stop was a dermatologist to see if he had any ideas what it was and wht to do about it (short of surgery in the hospital). He too had no idea what it was. He checked with some colleagues at the University of Washington, describing it to them. They had no idea either, and wanted me to come over to let them look at it, and also show it to the medical students as an example of the strange ass (no pun intended) things that the human body sometimes does that they will encounter as doctors and have no idea what the heck is going on.

Since it wasn't cancerous, and, aside from dashing any hopes I might have had of quitting programming to become a nude butt model, didn't cause any problems I declined and just ignored it.

A few years later, it started shrinking, and a few months later was gone.

One of the doctors told me that this kind of thing--a patient with some weird thing that the doctor does not recognize--is a lot more common than most people realize.

> it could have been used as a hook to hang a hat on, if for some reason I was naked and needed to carry an extra hat around.

It would be more practical to put the hat on your head, or on top of your first hat, if you were already wearing one.

Any mention or checking for it to be a pilonidal cyst?

I guess a biopsy would have shown that.

Sounds vaguely similar to something I had. My left index finger swelled up to about three times its normal size between the lower two knuckles, and was extremely painful to the touch (going through your A-levels whilst on 60mg codeine four times a day is an interesting experience!). No trauma, it just happened for no discernible reason. Various doctors had no idea what it was, and it was still like that some months later, so I ended up having exploratory surgery on it. Turns out it was just a fluid-filled sac of some sort - nothing particularly unusual, and not really any sort of growth, it was just there and shouldn't have been. It has never reoccurred.

Side note: general anesthetics are _weird_. I have memories from during the operation of me looking on that feel 100% real, but they _can't_ be (the room had no walls for a start, and I'm looking at myself in the third person).

I've read things that indicate they actively sweep a lot of weird stuff under the rug. I read of a case of a young boy diagnosed with cancer who spontaneously got all better for no apparent reason. Rather than investigate it, they acted like "must have been misdiagnosed."

When I began getting better when that's not supposed to be possible, my specialist scheduled me fewer appointments because "he had other patients that actually needed him." He expressed zero curiosity about how I was improving.

With shitty treatment like that and getting well on my own, when I moved, I didn't bother to get a new doctor. Internet strangers like to frame that as me being a nutter who refuses to see a doctor rather than doctors being jerks to me and me generally having no reason to see one.

With respect, your doctor’s response seems entirely reasonable. Spontaneous remissions, as this sort of thing are called, are known to happen, but the tools to understand why and how basically don’t exist, or at best are the purview of serious biomedical laboratories; certainly, your doctor couldn’t have mounted a serious investigation with the resources in his office. Meanwhile, the sick always outnumber medical practitioners, and there’s an essentially unlimited number of people in worse condition than yours who he could help; of course he would allocate his limited time to where it would do the most good.

Of course his response was entirely reasonable.

It also has the net effect of:

A. Making me look crazy in the eyes of the world. Gee thanks.

B. Ensuring that our current mental models for various conditions are reinforced rather than questioned in a manner that furthers knowledge about how to actually get well.

Also, I have a genetic disorder. Spontaneous remission doesn't really apply in my case.

Instead, I've spent more than 18 years actively improving my health -- while reasonable people call me crazy, treat me like absolute shit, insist I'm making it up out of a sick need for attention and tell me "extraordinary claims call for extraordinary proof." which is a polite way of saying "STFU. You aren't even allowed to talk about your experiences on the internet without first having irrefutable evidence." It's a de facto social gag order. Good luck proving anything when it's essentially Verboten to even discuss it.

My comment speaks to an entire system and entire world view that actively attacks and dismisses anyone whose personal first-hand experience fails to line up with the medical "party line" so to speak.

We have been calling people "crazy" for questioning current popular medical views for a long time, a practice that effectively cost Ignaz Semmelweis his life -- even though he was a physician with studies to support his cockamamie theory that "mortality rates go down if physicians wash their hands before seeing patients."

https://en.m.wikipedia.org/wiki/Ignaz_Semmelweis

Germ theory was later accepted and history has proven him right. Too bad, so sad for him. It doesn't bring him back from the dead.

Your experience may be 100% true and it would still not hold a lot of value for other people to hear about it. Either what you say is true and the odds of it happening are so small nobody can count on it happening to them, or what you are saying is not true and they still cannot count on it happening to them.

It is great that you survived and got the miracle cure that no doubt many people wish for, but if that story isn't one that helps or can inform other people why do they need to hear and acknowledge you? Especially given that the fact that it is medically a miracle makes it impossible to prove means that anyone else can only take it on faith. For the one miracle that happened to you, there are millions of people on the internet making huge claims that are almost definitely wrong. This isn't an environment conducive to good faith.

Then there is the frankly fairly problematic amount of anger that you express this with. It's perfectly understandable given the rest of the context that you put forth, but it makes the whole story even less palatable than it already was.

Your position that the fact that your doctor prioritised people who were actively dying means that you look crazy to everyone else is one that I can't follow, I'm afraid.

The "command" the brain fires goes through a tiny cable we call "nerves" so it doesn't strike me as particularly strange if some sort of obstruction renders you unable to move the leg, our debugging capabilities are lacking in many areas so actually resolving those issues is a different matter.

We can do a lot of "debugging". For example you can check if the muscles work on their own, which nerves are conducting and how fast...

It is known that flu-like viruses can cause temporary weakness/paralysis in kids. Some pediatricians know (though I didn't know it had a name: myositis) though I have the impression it can also be a temporary "polio-like" effect

Interesting, thanks for sharing. The plot of Yorgos Lanthimos's strange Greek tragedy "The Killing of a Sacred Deer" starts with a similar premise, and I had no idea it could happen in real life.

I have a coworker who's son just got this diagnosis. This stuff is scary. They caught it fast and were able to treat it but he still lost most control of his left arm. Long road to recovery but it seems some kids aren't as lucky.

I just got news that one of my kids Taekwondo instructors may have this. He was a healthy 21 year old male. Everyone is feeling devastated as he was so young and not completely reliant on life support for his breathing. No one knows if he will recover and it is terrifying. As someone with several kids this is really worrying.

Are you guys sure? Per that wikipedia page, there were 233 cases known as of last year. Total. It sorta strains reason that people close to two of those cases just happen to arrive at a thread in a niche forum site and report infections at the same time. Maybe there's a confusion of which diagnosis is which?

It's extremely rare, just barely at the level where epidemiology can inform decisions, which is the point of the linked article. Reporting is spotty and they're trying to get doctors educated.

They're talking about relations with one or more degrees of separation. A coworker's kid and an instructor of their own kids.

Including several degrees of separation allows one to find matches much more readily.

Perhaps you've played six degrees of Kevin Bacon?

If all the world is six degrees or less from everybody else, then we could perhaps say people have an average of 45 or so first degree connections to other people (45^6 == population of the world, approximately.) So at two degrees, there 45^2 = 2,025 people. That passes my sanity check.

So you've got less than 30 people in this thread accounting for let's call it 60,000 second degree connections in a world with 7,700,000,000 people and less than 300 people world-wide with the illness.

I don't know, even with birthday paradox stuff it still seems pretty unlikely to me. Even if we say half the population are losers with no friends and should be excluded from the calculation and therefore bump that 45 figure to 90, 90^2*30 is still a mere 243,000. If you knock it up to three degrees of separation with 90 first degree connections per person, then for 30 people you're passed 21 million which is getting somewhere I guess.

The numbers in the Kevin Bacon game grow very fast, but they still start out relatively small. And two degrees is relatively small.

They're not only checking two degrees though, they're checking as far as they can and just happen to find them within two degrees. So it's not "how likely are they to find them in two degrees", but "how likely are they to find them at any depth, and then given that they've found them, how likely are they to lie with two degrees."

> If all the world is six degrees or less from everybody else, then we could perhaps say people have an average of 45 or so first degree connections to other people (45^6 == population of the world, approximately.) So at two degrees, there 45^2 = 2,025 people. That passes my sanity check.

45 is probably much too low.

Your model there doesn't take into account any clustering which is really important.

You want to think of a higher number of first degree connections (higher average node degree), but where there's a large overlap in the second degree connections each first degree connection provides (so you can't just do N^6).

On the web, there's usually a ratio of readers/lurkers to commenters of somewhere between 100 to 1 and 1000 to 1. So if 30 people comment on this article, that means 300 to 3000 are reading it. That means your second degree connections need to be two or three orders of magnitude higher.

As this is someone who is not my family and only instruct my kids I would have to say no I am not sure but it is a candidate. It happened so fast I guess. I just checked out his gofundme and he just passed this morning I am a little in shock. If I hear more I will update. Here is a link to the gofundme if anyone can help out. https://www.gofundme.com/f/n6kda7-for-nick

As a parent I've come up with a mechanism to help when things like this worry me.

I have basically no power to protect against things like this. But I have tremendous power to protect against far more likely causes of harm like diabetes and heart disease and obesity.

So any time I'm having a moment of worry about their well being I find an extra hour to carve out of my day and take them to the park. It's therapeutic and makes me feel less helpless and feels like I'm gradually equipping them with the life trait of being an active person.

> But I have tremendous power to protect against far more likely causes of harm like diabetes and heart disease and obesity.

Not to mention cars, guns, and drowning.

Guns? Cars? Small stuff ;)

I’m worried about medical malpractice. Quality stats are hard to come by, but it’s estimated to be up a top 3 killer after cancer and heart disease in the US!

Probably not a top killer of children and young adults though.

Could be. Children and young adults go to hospital too and if medical errors are third only to the two biggest killers, which children will not generally suffer from, medical error could plausibly be the biggest killer. More likely it’s trauma from doing stupid things but if medical error is that prevalent it certainly kills plenty of children.

This is the stoic mindset, worry about only things you have control over.

You have a lot of power over this. Simply act as if we live in a world without vaccines. For most diseases, we do in fact live in that world.

By the way, we've found viruses that cause heart disease and obesity. There are no vaccines for these. Many viruses also cause cancer, not just the ones we have vaccines for.

Protecting against this is all about your day-by-day personal choices. Do you choose the restaurant with reusable metal forks, or the one that provides plastic ones in individual plastic bags? Do you choose the fruit salad and the veggie sandwich, or do you choose the applesauce and the hot soup? Do you touch your chair and then eat pizza with your hands, or do you push the chair with your foot and then still avoid eating any food that has been touched? Do you ride a crowded subway or drive your own car? Do you go to a movie theater or watch something at home?

Living your life as if you have crippling germaphobia is not healthy for you mentally (as the parent) and is also not doing your children any favours. There is plenty of evidence that having your kids grow up in very sterile environments will negatively impact their immune system as time goes on, both in terms of strength and allergies.

Here's a graph showing the clustering mentioned in the article [1].

[1] https://en.wikipedia.org/wiki/Acute_flaccid_myelitis#/media/...

Seems to peek every two years in september. Interesting.

When kids start school?

Why every other year, then? Cursory research tells me that this sort of cycle is super uncommon.

This sort of thing strikes fear deep into my heart. There’s nothing I can do to stop it. We can’t abandon our weak fleshy human bodies soon enough.

> "Cursory research tells me that this sort of cycle is super uncommon."

No, this is common. Look at measles: https://wiekvoet.blogspot.com/2014/03/looking-at-measles-dat...

You can see two things:

1) It is very seasonal, peaking in the late spring. My personal guess is it has to do with the relative humidity.

2) It is not uncommon to have 1-2 skipped years between large outbreaks. This is because the susceptible people accumulate until there is an outbreak. See SIR models: https://en.wikipedia.org/wiki/Compartmental_models_in_epidem...

If we are seeing that in this case, that means the virus is infecting many more kids than the few being detected due to these symptoms. Basically the virus is circulating freely but this is a rare complication.

My first thought was some kind of two year life cycle of an organism... there are some strange life cycles out there, like cicadas (or similar) that have 17 year life cycles.

Perhaps this is something similar? Maybe a mosquito-borne parasite with a two year cycle?

There really is no need for that. All you need is for the growth in number of susceptible people (usually roughly birthrate) be slow enough that the threshold for an outbreak isn't reached for a couple years. One reason for this could be a previous large outbreak so the growth is starting from a low baseline.

Another fascinating virus with cycles is the chicken pox virus. Not only does it cycle in the community as viruses do, but it also cycles generationally because older adults with shingles can infect children and give them chicken pox; it's the same virus with two very different activation modes.

In general our fleshy human bodies are amazingly good at fending off viruses, especially compared to our computers. Put a 10-year old computer out on the public Internet and see how long it lasts. A: Minutes, maybe hours.

> "Another fascinating virus with cycles is the chicken pox virus."

I'm not aware of any virus that is not cyclic.

On the other hand the Guitar Center POS system, which is accessible from the internet (as far as I understand, without DNS, just like, if you've got the IP address, you could hit it). But, it's so ancient that it appears to be totally immune to any of the late 90s viruses that are probably still floating around.

Oddly enough only for relatively recent computers. Put a windows 3.11 box online and there is little surviving to infect it.

That is not a security model I would be enthusiastic to try.

I had to use a similar excuse in college. I had finally got Gentoo 64bit for the G5 processor working on my Mac Pro when I went back to school. They wanted me to install their security spyware suite to get internet access in the dorms. My response was that I was probably one of a dozen people in the world running that OS build. What antivirus could they give me?

Of course I didn’t tell them it still booted into OS X and I was playing with making the OSes cohabitate better (e.g. shared UID across OS)

The WikiPedia article currently says "Prevention includes polio vaccination and avoiding mosquitoes bites."

The source[0] of this says "To prevent infections by AFM-related viruses , specialists recommend staying up-to-date with polio vaccines and to minimize exposure to mosquitoes," but doesn't say who these specialists are or why they conclude this.

Since the cause is wholly unknown (even though the symptoms and course have some similarities to polio and one outbreak of the disease coincided with an outbreak of West Nile), we can't really say whether these will decrease the likelihood of experiencing this syndrome, increase it, or have no effect. Right?

0: https://rarediseases.info.nih.gov/diseases/13142/acute-flacc...

I had something very similar to this in September 2006. I still have all my medical records from the time and a digitized version of my MRI because it was such a weird thing that no one was ever able to convincingly diagnose. I checked though and it doesn't look like there is any way to submit it since I'm not a doctor, and since it was before 2014, heh.

Is there any geographical clustering? The article mentioned Colorado GBS cases, but I could not find any mentioning of AFM one. If this happens mostly during the hot season and some insect vectors are suspected, I'd expect to see some concentration around hot and humid areas.

Apparently it's not that simple.

They don't say so in the article, but the trouble with identifying the causal agent is that the suspect strains have an incidence rate which is multiple orders of magnitude higher than the number of AFM cases. But as far as I know those virus species are not routinely tested for or differentiated that far. It's mostly "just a cold".

I think there are more specific causes for the GBS cases, so that may explain a local clustering.

Maybe it's like the cluster in India, in Bihar?

https://thewire.in/health/what-is-encephalitis-whats-happeni...

So it looks like best guess is some sort of mutated polio virus? Also seems to cluster from June to December range... I hope they figure out what exactly this is soon.

Notice, this isn’t just June to Late November, it’s also occurring every 2 years, not every year. This has me wearing tinfoil hats.

I'd reach for the insect repellant before the tinfoil hat. Anyone know offhand an insect with a two year life cycle that has some significant stage that peaks around September?

Even if such insect exists, they would have alternating two groups that would appear like annual, like cicadas.

Or appear every 13 or 17 years, like some cicadas. https://en.wikipedia.org/wiki/Periodical_cicadas#Lifecycle

This is a great natural wonder. Thank you.

It also invalidates my logic. Maybe there could be some vector with biannual periodicity.

While the researchers have probably looked into possible insect vectors, it's really not that big of a clue. Also I don't believe the suspect species are even known to be insect-borne.

Such patterns are unusual but potential explanations are plentiful. A warm climate is not only good for insects, but also for a virus trying to survive whatever way of transmission is necessary. Maybe there are two virus species that need to interact, or one virus and one other cyclical factor, and their cycles only coincide every other year.

I thought polio itself was on the brink of complete eradication, with humans as the only viable reservoir? Seems quite unlikely that it would be mutating this recently, so this has to be something pre-existing.

Such a virus mutates all the time, but no, it's not possible this is "a mutated poliovirus". Like you say, it was mostly eradicated, and diagnostic tests and vaccines are designed to catch any reasonable lineage.

No, not a "mutated poliovirus". Poliovirus is extinct in most of the world, so infections in the US are very rare and easily detectable. No chance to hide and mutate.

The suspect strains could be called very distant relatives.

I've been following this closely. There's no real data on the following:

- Is this happening in other countries? I cannot find really any established diagnoses outside of the US (though some countries have CDC-like pages on it).

- What is the gender breakdown?

- What is the age breakdown? (mean, median, SD)

- What is the geo breakdown? (city vs rural, major geo areas)

My son had this when he was 5. We had a difficult few years. Now mostly recovered. very scary disease.

Is there any way that propagation of polio related viruses is linked with reduced immunization rate? Like opening new "natural" reservoir for it to exploit/mutate in?

I wonder if it is the other way around, with the elimination of polio making a disease that has similar impacts on many fewer people more visible.

Yes, that's good point. Before polio immunization all similar cases may have been attributed to polio directly and now that polio cases are filtered every such case stands out. Did not think about that.

The suspect isolates are NOT descended from any known poliovirus isolates.

Vaccines against polio do not cross-immunize against other enterovirus species. There are no vaccines against most of these "cold" virus.

Regarding the mysterious biennial periodicity, I dug around for naturally occurring biennial events that have a synced timing. Didn’t find much, but I did find this article specifically about biennial periodicity in measles.

“Periodicity, synchronization and persistence in pre-vaccination measles” https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4938089/#!po=0....

>An analysis of data from more than 350 administrative areas in England and Wales using wavelets [9] showed that for pre-vaccination measles, (from 1944 to 1966) most locations are indeed synchronized and present outbreaks every 2 years...

Is this related to anti vax ?

>CDC asks for help

Welcome. You're now on the set of a Generic Epidemic Horror Movie A

This is a controversial book but worth looking into https://www.amazon.com/Moth-Iron-Lung-Biography-Polio/dp/171...

Just reading the first review on Amazon, I’m skeptical. They started with polio and ended with arsenic poisoning.

One (polio) is caused by a virus we have vaccines for. The other (arsenic) is a poison that was readily available and know in 1800s.

There is also misinformation in the description of the book, stating that polio just appeared in 1800s but it was around way before and identified in 1789. https://en.m.wikipedia.org/wiki/Polio

This seems to be some great anti-vaccine propaganda or fear mongering for a few bucks.

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