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Two Guys, a Red Box, and a Great Idea

Two Guys, a Red Box, and a Great Idea

Several months ago, we invited James and Rebecca over for supper. We didn't know them that well and because of what had happened in our house the night before, I almost cancelled.

Twice now, Mathilda has inadvertently overdosed on Xyrem. The first time was my fault. I had not written down the time of the first dose so that the Professor could safely administer the second. Why? Because I was out of my mind with exhaustion and I dropped the ever so important ball.

Since there has to be a three hour window between the doses, it's imperative there's a system in place from which both doses are accurately timed. We learned our lesson pretty quickly after that.

 
We have dozens of these notebooks that record the times The Professor and I administer each dose of the date-rape drug. We also record additional wakings and wanderings when Mathilda is on the prowl for food. Occasionally, we permit ourselves a gag or two and the odd message of encouragement.
We have dozens of these notebooks that record the times The Professor and I administer each dose of the date-rape drug. We also record additional wakings and wanderings when Mathilda is on the prowl for food. Occasionally, we permit ourselves a gag or two and the odd message of encouragement.
 

But the night before our evening with James and Rebecca, Mathilda had taken it upon herself to walk into the bathroom without waking one of us, and down the second dose two hours ahead of time. In other words, with a certain level of Xyrem already in her 8 year old body, she took in 3mg more.

After hearing the Professor yell from her room and us scrambling around on the internet for signs of what to look for, we spent the rest of the night watching her breathing, making sure she didn't vomit or become comatose.

We called the SDS pharmacy in Missouri. We took turns to sit by her bed until sunrise.

Then, when she woke at 5am it was as if nothing had happened. Except we were frazzled and barely able to think of anything other than our monumental parental failure and exhaustion all the next day.

James Farlow and Chess Stetson. Big brains, big hearts.

James Farlow and Chess Stetson. Big brains, big hearts.

I didn't know James had an engineering head and a heart for trying to ease our sleep deprivation. I also didn't know he had a friend called Chess.

So after a few email conversations these two guys came up with several ideas.

One was to design a safely timed device that will administer Xyrem to children whilst their parents sleep with peace mind.

 
My first thought was that they had designed a coffee machine I could fumble with in the mornings. Something I would keep within reach of the bed. The lamp is a little misleading non? It is in fact the beginnings of an idea that will safely administer controlled liquid drugs, and only goes to show that James and Chess are artists as well as experts in engineering and neurophysiology. Some people have a double helping of talent.

My first thought was that they had designed a coffee machine I could fumble with in the mornings. Something I would keep within reach of the bed. The lamp is a little misleading non? It is in fact the beginnings of an idea that will safely administer controlled liquid drugs, and only goes to show that James and Chess are artists as well as experts in engineering and neurophysiology. Some people have a double helping of talent.

 

Repeat--Sleep. With. Peace. Of. Mind.

The second was an interim measure that would trial their theory. A red box with a timed lid. A sort of  kitchen safe, except we put meds in it rather than money or tech, or whatever.

 
I should add that I've been tempted to buy another one for candy, coffee, and wine, except the standard size bottle wouldn't fit. Perhaps the kickstarter whose brilliant idea this was should take note.

I should add that I've been tempted to buy another one for candy, coffee, and wine, except the standard size bottle wouldn't fit. Perhaps the kickstarter whose brilliant idea this was should take note.

 

But any new routine with a Narcoleptic child is a big adjustment and moving towards Mathilda becoming safely-independent at night was always going to be bumpy. She's still quite young. At nine, how many kids are up through the night self medicating, figuring out how to safely time the date-rape drug when already under its influence?

It's a big ask.

And there have been several mornings where she has expressed a sense of loneliness. Narcolepsy is lonely and so is being awake at night with only the sound of cicadas and the hum of the freezer to keep you company. The nights can be incredibly isolating.

But without a cure in the offing, it's imperative to make the best of it. What other options for parents of CWN are there?

So here's what we do.

M goes to bed around 9pm. (Summer schedule--during school terms it's 8pm).

She wakes us at around 11pm-12am for the first dose. In the bathroom she eats, pees and knocks back 3mg of Sodium Oxybate. We record the time and help her back to bed.

We set a three hour limit on the red box timer. All you do is twiddle the disc on the lid and push it down. There's a count down from 5-0, and a groovy "vvrrtt!" sound that lets you know the lock has slotted into place. At this point my peace of mind kicks in, and after putting M to bed, I stumble towards a potential 5-6 hours of slumber.

So. Good.

Our version of the red box looks more like this.

 
The second dose of Xyrem and just enough food so she doesn't throw it up after taking it

The second dose of Xyrem and just enough food so she doesn't throw it up after taking it

 

When Mathilda wakes before the box releases its lid, she eats and goes back to bed (frustrated). Sometimes she wanders in to the kitchen because her appetite has finally kicked in and she's very hungry. More than once we have found her licking out the Nutella jar with a chopping knife! So now all sharps go away, including scissors. We double check the front and back door is locked and try not to feel like we're living with an elderly parent who has Alzheimers.

Then she sleeps a bit more.

And by the time she wakes again, the red lid is released.

Voila!

It's safe to take the second dose.

And that's what she's been doing for the two weeks. The red-box has given us the peace of mind to allow her to make baby steps towards becoming independent.

Since this is sort of a trial period, James and Chess would like to introduce another box (different colored lid) for the first dose before moving on with their more sophisticated plans for a timed dispenser of sorts. Combining the two boxes may take a bit of tweaking and there's no rush. Already the adjustment to the second dose has been a big help.

I think I'll look back at this time and realize that it was huge. Not just because the Professor and I got more sleep than we had done in the previous 5 and a half years, but because the perspective of two guys and the simplicity of a box has empowered a little narcoleptic to walk an inch taller. She feels good about her new level of independence.

 
James, Mathilda and Chess after a working lunch in Pasadena. Mathilda was able to tell them how the red-box has been great because she gets to do a dose alone. I was able to stay alert enough to track with their ideas. Most of them anyway.

James, Mathilda and Chess after a working lunch in Pasadena. Mathilda was able to tell them how the red-box has been great because she gets to do a dose alone. I was able to stay alert enough to track with their ideas. Most of them anyway.

 

Sometimes you need friends to lift your perspective to the giddy heights of a new normal.

So, to James and Chess: an enormous hats off and a huge thank you--and perhaps the next time you come for dinner, I'll serve up something better than re-heated curry.

But since I've never been one to make promises I can't keep, just come anyway.

James Farlow is the co-director of a non-profit called Sanctuary that helps churches welcome the LGBT community. For more information check outhttp://www.sanctuaryforall.org. He grew up in North Carolina, went to NCSU, and worked as a teacher in DC teaching Math and Physics. He also works as a landscape and portrait photographer. His amazing talent can be viewed at www.jamesfarlow.com. In his spare time he likes to brew beer, hike, play golf and discuss philosophy with the Professor and other nerdy types whilst in the final throes of finishing up an Mdiv at Fuller Seminary.

Chess Stetson Ph.D completed his doctoral and post-doctoral work in Computation and Neural Systems at CalTech, studying the Oscillatory relationship between cortical regions and using signals from individual neurons to predict decisions. He earned an AB form Harvard College (2001) and an MS from the University of Texas (2006). He also worked as an engineer at MIT Lincoln Laboratory and the Smithsonian Astrophysical Observatory building instrumentation for air and rocket borne experiments. He has appeared several times as a neuroscience expert on National Geographic.

The Kitchen Safe--Time Locking Container is available on Amazon.com and retails at $54.99. See also: http://www.thekitchensafe.com

Kevin and Jameson

Kevin and Jameson

The Gift of an Early Diagnosis of Narcolepsy

The Gift of an Early Diagnosis of Narcolepsy