Hi, i also see Dr Reading at James Cook for narcolespy. I am 20 and I have been diagnosed for just over a year now, on 4 modafinil tablets a day and go to Leeds University and wonderously manage to live on my own.
I started suffering from narcolepsy when i was 11ish - right when it came around to comprehensive school time - and i have to say everyone noticed, my friends, my not so friends, even the teachers, but nothing was said or done about it. I think it was just a 'lethargic teenager' outlook from the teachers and a 'ha ha - you can't keep awake' outlook from the people in my classes. I do think a job must be hard when having narcolespy - but school (to me) is so much harder. I don't think people realise how much pressure is on you at that time in your life, do well at school to get a good job, have a nice house, don't let your family down, do well in your GCSE's, go to uni, make lots of friends, 'fit in'. For me, it wasn't so much the school work that was a problem because i liked it, it was the making connections with people that i had problems with and i still do now. Instead of being able to go out with your friends you feel too tired and it makes you feel rather isolated as a child i found. Especially when you parents, of all people in the world, don't understand and just think you are lazy. My 'laziness' caused so many heartbreaking arguements with my parents just because they, and i at the time, didn't understand what was wrong with me. I can always remember once my dad was having such a rant at me for god knows what and i said for the athousandth time (it pretty much did take that long), i wanted to go to the doctor because i knew something wasn't right with me even if they didn't. But they didn't see why, and made out as if it was me ruining their lives by forgetting to do things when i said i would, or thinking and truly believing i had when i hadn't, or not listening and forgetting things easily. I said to him that its me who is suffering here, not you, you have no idea what this is like. And it's so true, they have no idea. It was a big joke until i got older and one god like doctor actually properly listened to me for the first time and started up the endless testing for this and that. Before that i had more bloodtests than i can remember and was given iron tablets for a while for something i knew made no difference whatsoever.
Anyway, my whole point to that was now years down the line, my parents, even though i'm 20, do offer me so much support because they do now understand in the best way they can. I can't express how this makes everything so much better for me, 'the sufferer', theres no arguing, i tell them to take note of when i fall asleep (for some reason its usually in the car) and they help me cope. If i am in any position to offer advice to parents with children suffering from narcolepsy, having your 100 per cent support can help so much and prevent so much unwanted stress.
My mam posts me extra tablets when i run out, runs me round back and forth from hospital to doctors to the pharmacy, and its just so relieving to know they are there and are willing to help me. I always tell them about the vivid dreams i have, and we laugh about them together to be more light hearted about it all. Its good to have a support network you know? And i would encourage any parent to provide this and be patient with us. (I get so bad tempered when i am too tired and i say things i don't mean to just to get people to shut up so i can have peace, i know this, so do my parentals, so they know to leave me be when i'm grumpy, things like this make a huge difference).
I don't think there is enough awareness of childhood narcolepsy in schools. Even now at uni, i don't get any 'special consideration' or anything, even if i did i wouldn't know where to start because everything takes so damn long!
Now that i do live by myself after this long long drawn out slog, i find i cope the best i can. I've learned to get up at certain times, take my tablets at certain times, turn to coke zero at certain times (my doctor actually said this to me to get through lectures lol!). Modafinil is an absolute wonder for me, some days its more affective than others, but i am so much better taking it. But i always know my parents are there when i do feel down about it, and it does happen alot. Point being, support is absolutley vital and for children most of all, because they don't always know, like me, whats happening to them either.
For all those parents out there who are supporting children with narcolespy, i salute you :)