Non-24: When someone you love is an okapi

‘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:

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.

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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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