Can the Child with Narcolepsy Thrive? (Part one: Meds and Schooling)
It's a question I began asking myself once Mathilda's health stabilized couple of years ago: What if she could do more than just exist with Narcolepsy?
What if Mathilda could go beyond coping with the 24 hour symptoms of a condition that renders her exhausted in the day and up most of the night?
What if she could thrive as a CWN?
It's bold question, but I think it's good time, and we are in a good place to ask it.
It seems to me that as parents of CWN we need to approach this exciting potential by addressing several aspects of their lives:
First up is to provide optimal treatment.
For some children that demands a prescription of stimulants, anti-depressant compounds or Xyrem--and for many, an exotic blend of the above. Whatever the mix, I am persuaded that a CWN can thriveoncethey are optimally treated and it's our job as parents to figure out with their specialist what medications and what dose is right for our CWN.
In our case, Mathilda takes Xyrem at night and Strattera in the morning. Oh, and iron supplements for her leg pain. The rest of her medication is by way of scheduled daytime naps. At the Narcolepsy Network conference two weeks back in MN, I was reminded by the panel of specialists that naps for children (and adults) is free medication. Once I grasped this fact, we tried very hard to educate Mathilda about the naps she often refuses to take, and try to work them into her routine.
It all sounds easy, but for us it meant moving half way round the world and working very closely with Prof. Mignot and Mali Einen at Stanford for the first year we were here. That was after she had already been struggling (and wrongly medicated) with the symptoms in the UK for the previous 18 months.
In the early days of living in LA, I wondered if we'd done the right thing. And that weighed heavily on me and the Professor. Especially on those mornings where Mathilda was hit hard with the side effects of Xyrem--throwing up on the lawn outside the school and then again before lunch.
But 4 years later, I'm glad we persevered.
There's no getting round this issue of finding the right medication (and doctor) and it's unfair of us as parents to expect our CWN to do well when they are not optimally treated. I'm sorry to say that in my limited experience there's a world of difference between the treated and untreated CWN. And this makes me sad because in many countries access to the right cocktail of medications is terribly hard and it can take along time to figure out what doctor, what meds, and what doses are best. But we cannot ignore it: Optimally treated CWNs have the potential to thrive, both in and outside of the home. Under-treated CWN ... not so much.
Secondly, the role of the school is paramount in partnering with parents.
I usually meet with the new teachers before the school year starts and ahead of time send them information about Narcolepsy. It gives them something to start with and an opportunity to ask me questions during the meeting. I suppose I assume they really don't know much about the condition and have never taught a CWN before just as I never expect to bump into a parent of a CWN at, say, the park. It's just not gonna happen. So the teachers get to read up on Narcolepsy and then ask me questions about Cataplexy, what caused Mathilda's Narcolepsy and is there a cure? She'll grow out of it right?
Back in July, I met with a whole team of educators from St Monica's Academy--two new forth grade teachers, her old 3rd grade teacher, the Headmaster, and the office manager. I sat there thinking that in a few years Mathilda will join us and hopefully do most of the talking. She will one day I'm sure of it. But this time, I informed them how Narcolepsy specifically affects my nine year old--what her cataplectic triggers are, how she needs a nap mid-morning and that she may not have the stamina or coordination that other children have by the end of the day when they break out for PE. And I mentioned that being so sleepy interferes with her working and verbal memory, cognitive processing and levels of concentration and alertness--very real threats to her learning and retaining information. Urgh.
For some reason I felt the need to describe what a typical 24-hour period looks like. That we come straight home (second nap in the car) in order to have time to do homework and make up the lesson shes missed. There's no room for extracurricular stuff if we are serious about managing the school work, chores and down time. It's a cost of the condition but I realized this way back, when over-scheduling both in the week and at the weekend messed with meds and her nap schedule. I mentioned the medication routine too. Just so they know the sort of things she is dealing with at 12 and 3 am when every other kid in her class is deep into Non-REM.
Because Mathilda needs to take a nap at school, I asked to look at the curriculum and timetable. And, because she needs to hit the sack by 11 am, I request that this happens during her strongest subjects which is language arts. She's a natural speller and reader but other stuff doesn't come so easily. So I specifically ask that she never misses Math or Latin. Not only does she need to be present for those subjects, but making up the lessons at home usually doesn't go well. I'm no Math teacher and have a Latin vocabulary of less than three words so am hardly qualified to help her with Prima Latina 4. No thanks.
We learned the hard way that the location of the nap is important in terms of giving Mathilda a sense of control over her condition. At her previous school when she was in Kindergarten and first grade, Mathilda was removed from the class and slept in the nurses office in a bed whilst others kids were shooting up on insulin or puking in the corner. Re-entering the classroom later on her own made her feel "different" and, over time, very angry. In fact I would go as far as saying she began to feel ashamed of herself. What we found works best is for her to roll a little mat out behind the desk and check out for 20 minutes, then slip back into her seat as if no one has noticed. This approach seems to be less disruptive, not only for her, but for her teachers and classmates. And that's very important too.
Then there's the social stuff--the bit I really don't like to drag up. Because Mathilda's class is very small, and because there's only 5 other girls in it, I spoke to the handful of Mums about Mathilda possibly being just a l-i-t-t-l-e bit cranky when she wakes up. So, if in the unlikely event of her upsetting of of her friends, may be they should call me ... and, whaddaya know? The phone rang.
That horrible moment when another parent asks you if "you have a moment?"
Total heart sink. Excuse me while I take the phone call outside and start deep breathing "Yes. I'm available for a chat about our girls. Of course."
So knowing that Mathilda tends to control her relationships and all the games during recess, I swallowed humble pie, offered a profuse apology (so did she) and woke up to the fact that navigating the social scene was going to be as important as the rest of it--meds, naps, and relatively easy conversations with teachers about academics.
The negative psychosocial affects of Narcolepsy was well and truly tightening its grip on our little girl, and I've had to face up to the depressing reality that living with a chronic illness has very broad implications. One that directly impacts on her emotional development, and that usually leaves me feeling like I'm parenting well and truly outside normal partners. There's no textbook for it. No wise woman offering her tupp'ney-ha'penny's worth at the school gate and no guarantees that what the Professor and I are doing is right.
But the principles of parenting don't necessarily have to fly out the window because our CWN are dealing with a unique set of challenges. It's still wrong to be rude, still right to be kind, and being in a family where we all have to pull our weight, there's no free pass. Not on chores, or homework--especially if the aim is is for her to grow into a young woman with integrity. But by the same token, I'm not gonna lie: half my heart breaks when I ask Mathilda to put her shoes on when she's falling apart. The other half when she's too tired to brush her teeth. But I want to hold to the fact that if we are serious about dealing with her whole body, mind and soul, we somehow need to balance our parenting tensions in the moment with the long term view of her living well and independently. One day.
With grateful thanks to Narcolepsy Network for giving me the opportunity to share our journey at the 2015 NN conference, and to all the brave parents who gave me feedback and who are navigating the same challenges with their own CWN.