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to ask about narcolepsy

(6 Posts)
GreatFuckability Tue 10-Jan-17 23:39:10

posting here mainly for the traffic, not gonna lie.

My ds is almost 12. he has some SEN including dyslexia and anxiety, and finds school a massive struggle. last year in y6 of primary we had a couple of instances of him falling asleep in class. I put it down to late nights, and made a conscious effort to make sure he was in bed by 9 at the latest.
Fastforward to now, and the situation has been getting worse and worse. He falls asleep at the drop of a hat. On the school bus (missing his stop more than once), at school, in the corridor at lunch time. I took him for some blood tests after consulting the doctor and he fell asleep in the waiting room. twice.
His blood tests came back normal. He has been referred to paediatrics as his weight is very low and his eating habits are shit (he sensory issues, with texture mostly and a real fear of trying something new) and are waiting on that referral.
Yesterday he fell asleep on the school bus home, but he is adamant that he didn't, that he 'blacked out' cos one minute he was talking to a friend and the next he was passed his stop.
He says he struggles to sleep. I turn off devices etc at a reasonable hour, though I do let him listen to music and audiobooks as his reading ability isn't enough that he could read before bed to relax.
I just don't know where to go from here. Does anyone have any experience of narcolepsy/sleep disorders?

smurfy2015 Wed 11-Jan-17 05:16:53

Hello GFA
My partner has narcolepsy so if you want to chat about it, let me know.

Can totally identify with him falling asleep on school bus etc. Partner has done that too, he went to toilet in a shopping centre and after 30 mins i took security in with me to mens toilets and there he was on loo sound asleep so falling asleep in different places is "normal" in my experience now

Has he had MSLT test or polysonograph done?

My partners eating is shit too, he has lost 5.5st in past 3 years simply cos not awake enough to eat properly

he sleeps over 160/168 hours a week so its difficult,

he has automatic behaviours where it looks like he is awake, he can respond but his brain is in sleep mode, its not an excuse he really doesnt remember conversations or actions etc

the "blacked out" is familiar, at first it was thought that my partner was having absences - its the excessive daytime sleepiness, its a sudden sleep which is impossible to fight off and the person may not be aware it has happened and will pick up conversation where left off

when he has strong emotions does he go "weak at the knees" so to speak,
i ask because one of the things which goes along with narcolepsy often is cataplexy, which is where the muscles lose muscle tone and lead to instant collapse the trigger is strong emotions (happy, sad, laughing etc) and the person is conscious underneath but has no control of their body - youtu.be/1PuvXpv0yDM

You will probably have been given information on sleep hygiene etc but if not il link you - the audio books are good to help sleep

can highly recommend narcolepsy uk - they also have a closed fb group and there are groups to support partners/ parents etc

main site - www.narcolepsy.org.uk/
www.narcolepsy.org.uk/narcolepsy-young-people

You say he struggles to sleep, i can understand that as partners sleep quality is reversed so he gets a lot better sleep during the day and is more restless at night

Also good to keep a sleep diary for him for comparison and whether he has the official diagnosis or not as this is not something other 12 year olds have to deal with, i would advise you to make an application for PIP for him

narcolepsynetwork.org/wp-content/uploads/2011/05/SleepLog11.pdf

Good luck and if you have any questions, il try to help

StUmbrageinSkelt Wed 11-Jan-17 05:25:21

Has an ECG been done for absence seizures? They can present like this.

GreatFuckability Wed 11-Jan-17 06:16:02

Rhsnk you so so much! I will definitely do the things you suggest.
No tests done at all, but I intend to speak to my GP today and get a referral. Some thing definitely isn't right. I've not noticed the weak at the knees thing though.
Thank you again!!

GreatFuckability Wed 11-Jan-17 13:03:02

Bumping to see if anyone else has any ideas.

Fatbird71 Wed 11-Jan-17 13:47:08

My mother used to suffer from this. It was very disconcerting, she would just drop off mid conversation, then come back round and try to join in the conversation again as she didn't realise that she had nodded off. Thankfully she didn't work by that time or drive.

I can't add anything helpful like smurfy but hope that you keep the pressure on your GP to get things moving so that you get the support you need. My mum didn't.

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