Non-24: When someone you love is an okapi

Hoofbeats‘WHEN YOU HEAR HOOFBEATS, THINK HORSES, NOT ZEBRAS’ IS A STANDARD INSTRUCTION GIVEN TO DOCTORS.

In other words, the problem is more likely to be caused by something common and well-known, than by some esoteric illness or virus or unknown bacterium.

More likely, yes.

But what happens to the person who isn’t even a zebra’s worth of common? To the person with the weird (ie, not yet well understood) illness?

Why am I asking this question? Because I just got a request for feedback from a ‘second opinion’ company, about which more in a bit.

I didn’t think three things could strike the same family: me, a father who is an extreme geek with experimental data, and an okapi*.

Never heard of an okapi? An okapi is an African ungulate that looks a bit like a gazelle someone has exchanged the legs of with a zebra. Yup. The legs are striped, the body plain brown.

It is real.

Once you see one, you will remember. Here is one from Wikipedia Commons for your convenience:

Okapi2.jpg

Horse treatment is standard – What, it doesn’t work for you?

And when your little okapi keeps getting standard medical treatment as a HORSE, and you finally figure out what the matter is, and ‘they’ (the medical establishment) could have figured it out a LOT sooner if they had even considered your input as a parent, well, the fury is rather large. Especially when this has been going on at LEAST EIGHT years and has ruined your little okapi’s life.

It is ironic, literally, that the mother in this family (me) has an invisible illness that is characterized as ‘of unknown origin, caused by attention-seeking, probably psychosomatic’ by most of said medical establishment. If you have one of these, you know how you are treated by doctors. Because this mother does, she has learned to be very determined and to question EVERYTHING.

But when you go to see doctors, TELL THEM what is going on with the okapi-child, and they basically ignore you because they can’t find something their little horse-tests tells them is treatable by normal horse-treatment methods, and they blame your little okapi for not following useless horse-recommendations better, then you start to get VERY frustrated.

Horse treatment makes okapis worse, but it must be the okapi’s fault

Worse, they give your poor little okapi things that don’t work, and then say that’s all they have. And refuse to dig deeper!

And the medical establishment is happier with a multiple-disease ‘diagnosis’ of which two parts are psychiatric and the third is ‘mild’ – and not responding to their ‘treatment’ because the patient isn’t following it – that you start to feel as if you, the mother of the okapi, must also be insane.

Small rant against the medical profession

You trust ‘medical professionals’ to deal with the medical side, the physical and mental side of living in a body.

They cultivate this to the point of absurdity by their authoritative demeanor and white coats and beeping machines.

And then they let you down, over and over and over – which is normal because these body/mind things are complicated, and insurance companies – but they make it worse by telling you, the victim here, that it’s your fault.

Bad enough the SLEEP DOCTORS – over all these years – couldn’t figure it out; after all, they’re HORSE-doctors. But you’d think they’d know there were other animals in existence, and that they might run across one every great while. They should be LOOKING.

The insurance company pays for a SECOND OPINION

The ‘second opinion’ people took a very careful history – and  ignored everything we told them. (These are the people you’re supposed to be able to rely on when the ‘first opinion horse-doctors’ don’t seem to be solving anything and are recommending things you are not so sure about.)

And didn’t even say, “if you think that’s what it is, here is what it will take to confirm or deny that.” And gave as a suggestion something that had already been tried for a LONGER period , and then ignored by the originating doctor AND the supposed specialist.

So we parents got involved. I took the information we’d been telling the latest batch of doctors, sleep and otherwise, and asked myself what it meant. I discovered a rare sleep disorder called Non-24 Hour Sleep/Wake Disorder. And it fit.

Non-24 Hour Sleep/Wake Disorder – inability to sync to the 24-hour day

Non-24 is a disease of the inability to sync circadian clocks with the normal day. Normal people have a 24+ hour day, which is synced, via light through the eyes to the pineal gland, to the actual day, adjusting as necessary for the seasonal changes in the amount of daylight. About half of all totally blind people can’t do this – they have Non-24.

And an unknown number of sighted people have Non-24.

Reported day-lengths range from a bit over 24 to several hours more. Our little okapi has a visible rotation, which turned out to be 27 hours. Once you get started on such a rotation, many things conspire to make it a bit longer, few to shorten it, and almost none to shorten it spontaneously to ‘normal.’

If you look up the medical websites and the literature, the disorder is considered rare in sighted people. After going through what we’ve gone through, my guess is that, since erratic sleep behavior, late nights, staying up all night, sleeping late, etc., are common behaviors among teens and young adults (especially college students), Non-24 may instead be highly underdiagnosed.

“I can’t help you if you don’t follow the protocol.”

How to find out if you’re lazy and characterless – or suffering from a sleep disorder:

We had to go to the extreme effort of getting 10 weeks worth of data ourselves, and having a professional statistician analyze it, and then find our own specialist (which the insurance company refused to pay for in-network, saying they have competent doctors there – colleagues of the horse-treatment one in the SAME building).

The specialist took one look at the graphs produced by the okapi’s father and said, “Yup. That’s it. You got it.”

No, the mother is not crazy. She is being ignored and discounted and treated like an idiot.

No, the child is NOT a horse. It isn’t even a zebra. It is an okapi.

And damned lucky to have the crazy determined woman for a mother and the extreme geek statistician for a father.

And incredibly lucky to find a researcher who studies okapis. And just might know how to treat them.

The moral of this story:

  • Listen to the crazy woman
  • Or: at least consider the possibility of okapis because you actually listened.
  • Or: a determined mother is worth something.
  • Or: be persistent – and be prepared for it to take a LONG time when you’re up against the medical/insurance establishment.

The sad part:

The treatment may take some time, but is not even expensive. It could have been tried a year ago, years ago. The standard horse-treatment actually makes the problem worse – because of the timing – though it MAY accidentally work if several weeks of it are followed (long enough to hit the right spot by accident – could be four weeks of misery). Maybe – as it might not be recognized???

I guess we should be happy this didn’t happen, because there is no understanding attached to accidental cures or treatments if the next time the problem recurs, it doesn’t work again by accident because, for example, it it not done for the right number of weeks again.

Even sadder: we picked the original sleep doctor (this time) because we were told she knew N24SWD. She didn’t, really. But we were getting surer and surer; she didn’t listen. She pooh-poohed the idea, said the data didn’t confirm it, said the insurance company wouldn’t approve a longer trial of actigraphy, said it wouldn’t show the patterns if the okapi was trying to pretend it was a horse so as not to be completely isolated; this isn’t true: the 10 weeks data we provided, and the scientific papers we were shown, took this into account, and talked about people trying to live with N24SWD and a social 24-hour day.

We are incredibly lucky, too, that a researcher was located in Philadelphia, a reasonable driving distance for us in NJ. We are incredibly lucky that he picks up his own phone! – listened to me! – accepted the data we sent him – and had a spot for us within a week. And that he has two sighted patients, and knows of more, and knows the researchers working on the larger problem of N24SWD in blind patients, who have the scientific integrity not to just study the patients who might be helped by the drug companies supporting the research (blind patients) but sighted ones as well.

And that feedback I mentioned at the beginning?

We had submitted ALL of the available data (they went back 8 years, to the first sleep doctor when she was a teen who was tired all the time, and the first sleep studies; plus took an extensive intake interview – almost an hour on the phone – during which we emphasized over and over that she was rotating), submitted it to a ‘specialist’ at a major university, and he didn’t even say, ‘This needs further looking into,’ except to recommend another week’s data-gathering with an actigraph. The company wants feedback. I restrained myself. Their ‘analysis’ was useless – and set us back three months while they took forever to gather the ‘data’ and run through a couple of ‘specialists.’

I’m still trying to figure out how to give them ‘feedback’ when they obviously don’t listen.

* How do you find out if you have Non-24?

The gold standard is to wear an actigraph for long enough to show the rotating pattern. A sleep log will show the pattern if kept accurately.

But the easiest first step is to notice the rotation: always going to bed later (if allowed to), culminating with entire nights spent up; long daytime sleep (if allowed); inability to wake up; chronic daytime exhaustion; missing important things in life such as exams by sleeping through them; and the inability to just ‘go to bed.’

NOTE: Actigraphy is done with a special wrist monitor – expensive, and borrowed through the sleep doctor (covered by insurance if it covers sleep studies). Unless conditions are perfect, the two-week period doesn’t show enough of the pattern. Instead, we bought and used a Jawbone UP3 because my husband was able to download the actual data, and massage it into the same kind of graphs produced by the commercial device. It was non-trivial; he is the expert statistician. Okapi uses it routinely now – the Non-24 specialist appreciates the data.


If you like my prose, consider reading my stories – they are written by the same person. Free short stories here, debut novel on Amazon. I’m working on more.

Thanks to Quozio.com for the quote software used to make the first image.

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16 thoughts on “Non-24: When someone you love is an okapi

  1. Pingback: If it wasn’t for the dance… | stevebargdill

  2. marianallen

    I know you didn’t post this to fish for praise, but your little okapi is lucky to have such peaceful warriors for parents! I’ve been very lucky in most of my doctors, but there have certainly been a few I had to metaphorically grab by the lapels and force to stop patient-hopping and listen. It must have been so difficult to keep looking until you found someone who would listen to you. Your daughter sounds like a very special person, too, to steer steadily toward her goal and trust you and her father and the new doctor. Wishing you all success!

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    1. Alicia Butcher Ehrhardt Post author

      Thanks, Marian.

      I worry about the other kids, the ones who are labeled problems, lazy, unmotivated – when what they are is sleep-deprived. There’s a reason one of the easiest ways to torture someone is to not let them sleep.

      Late teens/college are a tumultuous time for the children turning into adults, at best, but when there is something underlying, it can be impossible to deal with.

      Liked by 1 person

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  3. Jeff Harrison

    What researcher did you speak to? I have sighted non-24, I developed it near the end of college. Trying to finish has been a bit rough (7 more credit hours!), but once I get through I can work on whatever schedule I like (I am a programmer). Admittedly loss of opportunities for employment, dating, and life in general scares me a lot.

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    1. Alicia Butcher Ehrhardt Post author

      Dr. Philip Gehrman at the Penn Sleep Center in Philadelphia.

      My okapi has 7 more hours to finish her college degree, too.

      Where are you? Email me at abehrhardt at gmail if you need more information.

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  4. Catana

    What strikes me is that there’s so much more knowledge now about diseases and conditions that once had no treatment, but physicians have less time and less interest in learning about them. 40 or more years ago, my husband developed a seriously painful problem that incapacitated him at times. Lots of tests, no answers. So I started doing some research — this was before the internet and Google, so it was a miracle I figured it out. He’d become lactose intolerant. Had him do strict diet changes to confirm it, and when we were sure, we went to his physician, who’d not only never heard of it, he wasn’t interested in my findings or in learning about it for himself. And who the hell was I to diagnose a medical problem? Tossed it off with a shrug, basically.

    Turned out hubby could eat a small amount of dairy, but not every day, if he wanted to avoid the problem again. I wish it was as simple for your daughter, but at least you’re making a good start. At least we might expect most physicians to know about lactose intolerance now.

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    1. Alicia Butcher Ehrhardt Post author

      I have a friend whose child is lactose intolerant – and they tested specifically for it, and STILL missed it. It wasn’t until my friend paid a lot of attention, and then tried the pills they have now, and insisted a specialist retest (not particularly seeking to get the diagnosis, just to eliminate it for sure), it turned out this kid really can’t tolerate much at all.

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  5. J.M. Ney-Grimm

    I am angry that your beautiful okapi has struggled for so long with this, when her disorder is a known one and when there is a known and effective treatment for it. I pray that her recovery is thorough and complete, and that she draws strength from surviving her ordeal, a strength that allows her to go forward into prosperity and loveliness.

    You are an awesome mother, Alicia!

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    1. Alicia Butcher Ehrhardt Post author

      I am more angry that the people who SHOULD have helped – and should have had the knowledge to identify problems – did not. I’m just glad my okapi is a good kid, and didn’t get frustrated and head off into so many bad paths kids use for ‘relief.’ So we still have the sleep problem to deal with – but not all the other things she could have picked up.

      And I really think the school should have caught it, or the many counselors and physicians she’s seen. Somebody.

      I’m glad she came home, rather than trying to survive on her own – and I’m glad she had the option. It’s hard enough this way! She is working SO hard to do what she’s told – she trusts this guy. She’s had an almost-two-month stretch of not rotating (by working very hard at it) – but she tried similar things before with THE WRONG TIMING (which actually makes it WORSE), and when the specialist told her what he wanted her to do, it was a very big leap of faith.

      It helped that all the data we took (and hubby’s gorgeous graphs) gave the doctor the exact timing he needed to get her started. And that it’s spring, because part of the treatment is light at the right time (she’s supposed to go for a walk in bright sunlight for at least a half hour between 2 and 4 PM, or use my lightbox if it’s raining), which would have been much harder in winter. Sort of like the standard ‘sleep hygiene’ way of using lightboxes – except that doing it at 7 AM makes the rotation worse – which is what the sleep doctor was having her do.

      We’re not out of the woods yet, but at least she has a guide who MAY be able to at least stabilize her on 24 hour days, if he can’t shift it to the ‘right’ time. There are jobs one can do that way. The rotating makes almost all normal life VERY hard: you can’t count on when you’re going to be awake, not for sure. And you might be able to get yourself up and to someplace – but you cannot guarantee you’ll be even semi-functional. You can’t WILL yourself awake, though you can hypercaffeinate yourself. For a product designer with no degree (7 credits short) and no experience, freelance work is not going to be easy, and dealing with clients on a business day cycle hard. With no reputation, employers and clients don’t have much incentive – and with no stability, it’s hard to be productive. That she’s still in this game amazes me. And I’m so grateful.

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      1. J.M. Ney-Grimm

        I am more angry that the people who SHOULD have helped – and should have had the knowledge to identify problems – did not.

        Yes, that’s what I meant.

        I’m glad she is in the game, and I want her to win it.

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  6. juliabarrett

    To be honest, a lot depends upon the physician. His or her background. What he or she has seen in practice. It also depends upon the doctor’s stress level. These days most docs just want to get the hell outta there. They don’t have time to listen. They want easy fixes. Because unless you are in a concierge practice, you have maybe 15 minutes, if you’re lucky, to see each patient. Sometimes 10. And patients have more than 15 minutes of issues.
    You have no idea what it’s like from this end. My husband is a physician/administrator with loads of experience, and he is always fixing stuff and finding stuff the docs working under him miss. Because they simply do not have the time to really hear what the patient is saying. AND, this is a big AND – the government and insurance companies stress evidence-based practices. They do not pay for intuition. They have no interest in okapis. If it can’t be proven by lab tests or an x-ray it’s not valid. Therefore doctors are no longer rewarded, in any way, for using their intuition and sensing that there might be something else going on. Doctors no longer get reimbursed for listening or for extending their brains even a tiny bit.
    I’m serious about this. I worry about the next generation of doctors. It’s getting worse. Thanks to evidence based medicine, if it ain’t in the book of approved diagnoses, it doesn’t exist.

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    1. Alicia Butcher Ehrhardt Post author

      EVERYTHING depends on the physician – in the system.

      We went to the sleep doctor last year because she supposedly knew about Non-24. I went in with very strong anecdotal evidence of watching my daughter’s day rotate. She insisted on doing a complete sleep workup and sleep study – which cost the insurance company (or would have cost me without insurance) in the neighborhood of 50K by the time they were done – that was okay.

      The Non-24 specialist and papers said normal sleep studies are basically useless, because you don’t know which part of a cycle you might be hitting. His first comment (after years of this) was that they seemed to have done an awful lot of sleep studies on my daughter.

      Then, when I wanted to go see the specialist in Philadelphia, the insurance company told me they had competent specialists in-network – which turned out to be two MORE doctors in the same group as the last one, and whose office said they had no Non-24 experience or patients when I called. And actually, when told daughter has Non-24, referred me to the specialist we had already seen (once we found him, I wasn’t going to waste another day of her time, if we had to pay for the whole thing ourselves. Now I still have insurance company to deal with.

      It IS in the book, sort of, as a ‘circadian rhythm disorder.’ It is a rare disease (though, as I said, my guess is that it is nowhere as rare as they say, since you don’t go looking for this kind of data – which is unbelievably clear once you realize what is going on – unless you have a clue.

      It wasn’t until she had to drop out of college and come home that I was able to observe, and the idea finally hit me. Then I went looking. And found it. And I was right.

      All those steps are not available to many young adults on their own – they don’t have the observational skills of two parents wondering why a bright child is so erratic. I won’t tell you the number of things she probably doesn’t have that she was diagnosed with and ‘treated’ for, never very well. Once she’s straightened out – if possible – I intend to send a note to everyone in her medical file who missed this, especially the RPI school health center, because she is probably not unique.

      I know doctors are under pressure. I am organized and coherent (at great personal cost) when I go or take my daughter. We are cooperative ‘good’ patients. But it’s a losing battle sometimes. And they have access to all the weapons.

      Oh, and the specialist, who is a psychologist PhD, not an MD, listened really well, and caught it immediately.

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      1. juliabarrett

        Because he or she is listening. Doctors don’t have time to listen and listening is no longer taught in medical school. Now it’s all, as I said, evidence-based. If it ain’t in the data base, it isn’t real.

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        1. Alicia Butcher Ehrhardt Post author

          It was handed to the last sleep doctor on a platter. It WAS the correct diagnosis (even if it was ‘by internet and by mother,’ which I’m sure doctors hate). And she did NOT send us to a specialist (no skin off her back – we’re in a PPO and didn’t need a referral).

          The ‘data’ was reviewed by a second doctor, a psychiatrist who was also a sleep doctor; he prescribed antidepressants.

          Then the ‘second opinion’ doctor.

          NONE of them seemed the least bit interested in the possibility that the sleep pattern was a continuously rotating forward pattern, with occasions where it got dragged back at great effort so my daughter could participate in something with friends. A pattern I saw over a whole year. Even when we specifically pointed it out, and they SAID they understood Non-24. What they meant was ‘I have heard of that,’ not ‘I know about that.’

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