The Psychosocial Impact of Narcolepsy on Children and Parents—Introduction
Every parent has known the acute embarrassment of a young child that won't do as they're told just as most two year olds have thrown a paddy at Tesco or Trader Joes. And if you're lucky enough to have not felt it, you've seen it. But for children with narcolepsy (CWN) who are pushing the boundaries chronic exhaustion every day, getting a handle on their emotions is beyond them.
All the while Mathilda developed the clinical tetrad specific to Narcolepsy--Hypnogogic Hallucinations (HH), Cataplexy, Excessive Daytime Sleepiness (EDS), and Sleep Paralysis, a backdrop of complex behavioral problems emerged. At first, she was grumpy, rude, and downright disobedient--and as extreme exhaustion took hold of her, we witnessed a personality shift that so was so marked, she was barely the child we knew and loved. It is no exaggeration to say that we often felt we had lost her. And, if I'm honest, there are still some days when I struggle to see the old Mathilda. I try very hard not to dwell on that.
Photos of our pre-narcolepsy daughter are telling. She might be physically recognizable, but if you knew her as we did, you'd see this picture and be confused. She was one child then, a different child now.
It's well understood that Narcolepsy, both in adults and children goes undiagnosed or misdiagnosed for years, sometimes decades. And it's not difficult to understand why.
Apart from the fact that less than several hours are dedicated to the study of sleep disorders in medical school, EDS makes the child look indolent, HH make the family seem as though they make poor lifestyle choices (in our case we were told to switch off a TV we didn't have) and Cataplexy is so weird that few doctors recognize it first hand. More than that, the psychosocial manifestations of Narcolepsy on the pre-adolescent child is often dismissed as it is easy to write off a child who appears to be excessively sleepy (lazy), or very naughty (crazy). In short, the behavioral components can present not only as a red-herring but one of the most challenging aspects of the condition to deal with--for parents, teachers and carers. And the depression, anger, social withdrawal and shame isn't treatable in the same way that say, Cataplexy is. I've even questionedon bad days is it manageable?
I've also questioned why this hugely challenging component of the condition rarely comes up in the doctors office.
Given that it usually takes years to diagnose Narcolepsy, CWN are frequently mis-labelled with behavioral problems and consequently mis-treated, losing crucial time in receiving the right medication. We narrowly avoided the clutches of the Child and Adolescent Mental Health Services (CAHMS) ourselves. After being told Mathilda (and I) would be referred to the Psychiatric Department, I remember thinking "if only."
If only we were dealing with something that demanded a crash course in parenting and a time-out on the naughty step. I was confident that if that was all we were were facing, I could handle Mathilda's behavioral issues with my eyes shut. Only, as a physiotherapist, I was also certain that whatever was wrong with her, was neurological in origin, and that the psychological problems she was having were as a result of an organic brain disorder--poor girl was, as she put it on more than one occasion, breaking to pieces. Thankfully, just before the psychiatric referral was made, Mathilda received a diagnosis of Narcolepsy by an Indian doctor visiting the Bristol Children's hospital. We finally had a name for it.
But the bizarre spectrum of Narcolepsy symptoms that impacts on the psychosocial development in the CWN and are more profound and complex, extending far beyond the child being merely obstreperous. Indeed, the display of erratic and demanding behavior typical of CWN is the external manifestation of what internally is far more worrying--feelings of shame, self-loathing and low self-esteem which I will refer to in another blog post.
And still, this aspect of Narcolepsy I think is having a profound impact on her now and because she's so young and none of it's going away, it will undoubtedly mark her in adulthood. This is perhaps why the behavioral side of Narcolepsy in children needs to be thought through.
I've delayed writing this post for weeks and weeks, hoping to come up with a solution. Not a quick fix or something we can all grab at in the moments of desperation but, something as parents we can constructively handle, confident in knowing that how we facilitate their complex psychological struggles will impact positively on their futures. I'm only too aware, on the back of todays' meltdown that I'm as usual, out of my depth.
Perhaps in raising the daily challenges of this aspect of the condition might illuminate our paths as we strive towards enabling our kids figures themselves out. And in doing so we can move beyond the hourly struggle we have and parent from a perspective that is more than than just crisis management.
I would love to know what you all as parents and care-givers have found helpful in dealing with the behavioral challenges our CWN deal with daily. I'm sure we're not alone in this.