Confessions of a Narcoleptic Carer
I have been asked on more than a few occasions what any given night in our house looks like. And sitting here at 2.35 am is a good as any time to 'fess up.
What I should point out is that Mathilda is on a medication called Xyrem (Sodium Oxybate). It's a drug that helps her to sleep deeply but since it's shelf life is pretty short, she needs to take it several times through the night, 3-4 hours apart. You will know it as the date rape drug.
You read that right.
I know. It's shocking. It's horrible. My echo-location is picking up your stifled gasps. I hear your estimation of us as parents plummet. All those times the kids behaved inappropriately towards your child suddenly make sense.
They give their kid the date rape drug.
The Professor and I freaked out too when we first realized this was likely to be the most effective medication to deal with the plethora of symptoms Mathilda experienced. It's been one of those tough decisions life traps you with.
Not only is it a first line of treatment for Narcoleptics but in many countries and for many individuals it can be very hard to get your hands on.
Which is one of the reasons we came here.
The other reason we crossed the pond is that it takes an expert above all experts to know how to treat the youngest narcoleptic in the world. And that man is Professor Mignot.
Half way through the appointment we were warned that 20% of narcoleptics do not respond to Xyrem. When Professor Mignot told us that I was reduced to a demented state of neurosis. My own Professor turned grey around the gills and I all but picked him off the floor. It never occurred to us that treatment might not work.
We had just moved our family to California for good.
He had left his job at Bristol University and was a week away from starting a new one at Fuller Seminary.
We had sold our house in England.
We had Libby and Elliot to worry about.
And we had just said goodbye to our families.
Leaving Stanford and heading back to Pasadena to collect Liberty and Elliot, I am all weighed down by two bottles of Xyrem just given to us, the realization that narcolepsy might ruin our lives if Xyrem didn't work and a little girl who had very little idea of what was going on.
Or what was ahead.
Like surgery for sleep apnea and side effects medication.
Xyrem is not only abused on the party scene, but also in the fitness industry for those in search of the perfect physique. Known in gyms as GHB, Xyrem offers the over exerciser ultra-lean muscles and a little extra growth hormone. So you can imagine it has crossed our minds from time to time to try it out. For Mathilda's sake obviously.
The only down side is that it tastes exactly like seawater and would leave me unconscious.
Being both widely abused and unjustly expensive, Xyrem is distributed from a pharmacy somewhere in the depths of Missouri and after the usual security questions, arrives every month in a little van, delivered by a man of few words. It plays out like some covert operation on our front door step which only adds to my sense of responsibility. I then store it away in a totally top secret place just in case anyone who knows us is tempted to flog it and make a mint.
It's not so inaccessible though that I couldn't grab it when the big one hits. I stress about things like that living here and have visions of the five of us the crouching under our Crate and Barrel dining table clutching bottles of Xyrem each instead of water whilst the floor shifts in waves beneath us. I've even thought about doing practice earthquake drills just so we're all clear.
Before this happens ... it is worth noting that Xyrem has made a huge difference to Mathilda's symptoms. In the UK when narcolepsy had hit her Hypothalamus destroying 70 million neurons, she could no longer achieve restful Non-REM sleep but instead experienced hypnogogic hallucinations. These are intensely vivid experiences common to narcoleptics that have not only a visual and auditory component but also a tactile element. One hallucination in particular I remember well because earlier that day we had built a tiny pond in the garden and filled it with tadpoles. Hearing Mathilda cry out that night the Prof. and I leapt out of our own beds and found her deep in a trance-like hysterical state, insisting there was a giant bullfrog bouncing on her stomach. It wasn't only that she saw him fill the room, but that she felt the pressure on her body and smelt his breath on her face. Hallucinations like these torment narcoleptics night after night and mess with their heads.
So Xyrem puts pay to hypnogogic hallucinations and has a massive impact on daytime symptoms (namely excessive daytime sleepiness and cataplexy). It's a drug worth fighting for and worth spending months dealing with nasty side effects like vomitting and headaches.
On any given evening, somewhere between 7-8pm Mathilda falls asleep in bed unaided. If she is going to hallucinate, she'll do it in the next few hours.
Around 10/11pm she wakes up for the first dose. I usually take care of this and then hit the sack but not before writing down the time at which Xyrem was administered. We found this to be an important safety step a couple of years back when between us and in our own fog of exhaustion, The Professor and I didn't communicate the time and gave her the doses too close together. I still feel bad about it.
The Prof. then listens out for her to wake and tell him its time for second dose which is around 2/3am. She repeats the same process ...
Eat a little food (so as not to throw it back up), pee a little (so as not to wet the bed), and then down the seawater solution with a glass of water.
Back to bed for an hour or two until her narcoleptic hunger wakes her up somewhere around 4-5 am. After a bit more wandering around and a bite of something more to eat, she then drifts in and out of sleep for an hour before breakfast and the day medications that will keep her awake for the next four hours.
The Professor often starts work after he's done with the 2nd dose. Three in the morning is a good time to start writing or marking papers. But it doesn't feel so fabulous by lunch time the next day.
I could say a million things here ... how Mathilda began to wake up, how the hallucinations became bearable, and how her parents reclaimed that thing precious to all of mankind.
But perhaps the photo above, taken less than two months of landing in LA, speaks for itself.