5 replies to this topic

[pray4help]

my son still has not been diagnosed with N but the doctor said he feels confident that is his problem - he is a great soccer player and has been for several years (plays on an elite travel team at 12 yrs old) he does not have any problems with the sport. when he plays basketball, football, table tennis or just throwing a ball he expresses the strangest facial expressions- almost like a drunken look- his eyes get very narrow, mouth gets drawn and his tongue sticks out and head slouches, he never falls down but he staggers alot.
he never shows this on the soccer field but every other sport he does this. Does this sound like cataplexy to anyone?
just a little background a year & 1/2 ago he was sleeping 17 hours a day and the doc gave him ritalin which kept him awake but the side effects were terrible - after seeing a holistic md and doing a few detoxes and taking daily vitamins and new diet we have seen more than a positive result. He still gets tired in the afternoon but manages to stay alert and he might take a nap 2 or 3 times a week but that is it. he stays awake during school has soccer practice everyday and falls asleep around 10pm some days without a nap - but he does get tired everyday!

[pray4help]

after reading my post again - i realized I left out the most important part - my son realizes these expressions are different and they control his performance and he is extremely embarrassed about it - i will watch him walk away from the group and excuse himself. I am so afraid the doctors are missing something - we have seen so many doctors and they don't give alot of answers.

[Kathleen]

As you may already know, cataplexy is brought on by strong emotion; so if in those sports, he feels a certain way, anything is possible. Keep an eye on him during any high emotional time, remember cataplexy can be extremely subtle. People don't always fall down. Ask him if he "feels" different.
Keep us updated.

[hathor]

there was a programme made for tv about people with narcolepsy and cataplexy. there was a young girl on it who had bad cataplexy. the slightest thing triggered an attack. except for one thing. that was ballet. it was the only thing she could do that she loved so much without having an attack, even the ballet exams, she managed to get through. i have had N&C for so long now, i am not a doctor but what u explain with your sons face happens to me. i dont always know it is doing it tho until someone mentions it. i remember playing football at school one particular day. i hated PE and sport so i never took it seriously. there was a wall all the way around the football pitch and i got cornered so i had to kick the ball backwards which everyone thought was funny and so did i and i can still remember the feeling. i never laughed when i was younger and at that point i knew i had narcolepsy but had never heard of cataplexy, but this one day i laughed and can remember feeling my face start to twich and my eyes go and my knees buckle.my mum had told the doctors i had never really laughed out as a kid cause i said it made me feel funny so i must have had cataplexy my whole life but this one day i remember so well, i think was the first major attack. if i hadnt been leaning on the wall i know i would have gone down.
i had 2 things in school that i loved doing so much. one was playing the violin,which i did almost all the way through school until i left and the other was art which i still enjoy. i dont remember the N&C EVER getting in the way of them. so my point is if someone who suffers from N&C really loves something so much i dont think it affects it. its strange but it must have something to do with being so focused on what you are doing it just dosent seem to happen.anyone else notice this?

[pray4help]

there was a programme made for tv about people with narcolepsy and cataplexy. there was a young girl on it who had bad cataplexy. the slightest thing triggered an attack. except for one thing. that was ballet. it was the only thing she could do that she loved so much without having an attack, even the ballet exams, she managed to get through. i have had N&C for so long now, i am not a doctor but what u explain with your sons face happens to me. i dont always know it is doing it tho until someone mentions it. i remember playing football at school one particular day. i hated PE and sport so i never took it seriously. there was a wall all the way around the football pitch and i got cornered so i had to kick the ball backwards which everyone thought was funny and so did i and i can still remember the feeling. i never laughed when i was younger and at that point i knew i had narcolepsy but had never heard of cataplexy, but this one day i laughed and can remember feeling my face start to twich and my eyes go and my knees buckle.my mum had told the doctors i had never really laughed out as a kid cause i said it made me feel funny so i must have had cataplexy my whole life but this one day i remember so well, i think was the first major attack. if i hadnt been leaning on the wall i know i would have gone down.
i had 2 things in school that i loved doing so much. one was playing the violin,which i did almost all the way through school until i left and the other was art which i still enjoy. i dont remember the N&C EVER getting in the way of them. so my point is if someone who suffers from N&C really loves something so much i dont think it affects it. its strange but it must have something to do with being so focused on what you are doing it just dosent seem to happen.anyone else notice this?

hathor,
thank you for sharing your experiences... it really helps to hear other stories. my son loves to draw too and he has an extremely wonderful gift. for the most part my son has always been extremely athletic since this new sleep disorder started he has really struggled staying at the top of his favorite game (soccer). he still has the skills that make him a great player but he has slowed down in his speed alot - and his running form has changed - he looks ackward, he shuffles his feet and keeps his arms stiff. he does not notice it on the field but when he works with the trainer and he enforces the correct form he grabs the speed right back and runs like a champion. as his mom i think he is great no matter what he does but he is more than determined to remain on the best team and he works twice as hard as everyone else to make it happen. i think his determination has help more than any medication ever could.

[hathor]

hi. u sound like a great mum, as long as u are your son will do fine. my mum was always 110% behind me when i played the violin and it meant so much to me, i made the stupid choice of quiting when she was dying of cancer and i still regret it cause i know i was good. encourage your son to do the things he enjoys and not to let the narcolepsy get in the way of anything!!! when im tired i get really unsteady on my feet there is no way i could run across grass playing football lol. my be your son feels at ease with his trainer to be able to let himself go? when i played my violin my comfortable place was when it was just me and my teacher. i had a teacher when i was about 8 yrs old way before i was diagnnosed and one dinner time she had me playing the violin with her. she was my favourite teacher she taught me everything but this one dinner time i was playing over grade 8 music with her even tho i was only playing grade 2 with my proper violin teacher who terrified me.
i possibly get my narcolepsy from my dad. the docs told us it could be hereditary in some cases and they really think it is in my case. so we all know it could be in the family. if i had a kid and it did have narcolepsy i would never let it think the narcolepsy can get in the way. there is no reason we cant live perfectly close to normal lives. i am lucky to have an honest family so i have always known it can get in the way of career choices but when it comes to things that i enjoy doing and living life over time i have learnt to cope and use commen sense for what i can and cant do and when to do it. i live on my own and have never had a fire from falling asleep or any thing like that, i have been like a third parent to one of my sisters kids i have helped bring them up as much as she has, i look after other peoples children alot, i dont drive i dont think i would be safe but that is my choice i can get my licence if i want it. i have regular nights out with friends who totally get my condition, basically i get on with life and love it.
is your son being tested for narcolepsy if he hasnt been diagnosed properly yet? i was about 12 when i was diagnosed and i was told it was proberbly narcolepsy first, the test were just to confirm it.
keep us updated!!