Hi Mariam. I would suggest you videotape these events and take the images to a neurologist. This would be most helpful and might help you get a diagnosis sooner.
Does this make sense?
Yes this makes sense. I wanted to know if you think these episodes might be related to epilepsy or narcolepsy or something else: we have seen videos of cataplexy and this is what it most resembles.
Yes. Could be cataplexy, but does not sound like narcolepsy because he remains alert.
Does he remember everything after a spell?
Thank you. But can cataplexy be present without narcolepsy? - I thought they were connected. It is true that he remains alert through out these episodes, so it does not look like narcolepsy at all.
With cataplexy, it occurs rapidly, usually during times of emotional stimulation and the person recovers almost immediately.
Cataplexy may be the first symptom of narcolepsy.
No it is not an instant response to emotion: these episodes occur a short time (up to 10 mins or even more) after some stress or frustration or anger, and my son is then paralysed for a good few minutes or even an hour, so it is not always clear what the trigger has been at all. He can begin to come out of the seizure and then it recurs and lasts another half hour. At other times it s very minor. It is very unpredictable! Do you think this could be cataplexy in that case, or perhaps some different condition that is less well-known?
The diagnosis can be difficult to pin down right away. He is a"good" age for new onset narcolepsy/cataplexy but a seizure disorder needs to be ruled out first.
What other seizure disorders are there that it could be I wonder? I have not heard of any others. It does not look like epilepsy as the paralysis seems to be the only symptom?
Yes he seems to remember everything quite clearly, although today's spell he was a little more confused and his eyes had closed.
I would suggest you get a polysomnogram (sleep study) and a multiple sleep latency test (MSLT). He might also need a lumbar puncture.
Ok thank you. I expect those are the things that they might investigate next but I know this is speculation because obviously I am keen to know what it might be, so would you have any idea what sort of condition they would be looking for/expecting to find? At the moment it does not seem to fit any particular category - or perhaps something like new onset narcolepsy is slow or gradual to develop, like in this case? Can it be a gradual onset? He has never fallen suddenly asleep yet, like I have seen in Narcolepsy.
Yes, I would suspect this is the initial stage of narcolepsy.
That is very helpful, thank you. It helps to have an idea about what it MIGHT be, so we can prepare ourselves. And also eliminates fear of the unknown! Thank you for your time I appreciate it.
You're welcome. Hope all works out for your son. He is lucky to have you on his side.
Thank you, ***** ***** out.
Roger that. :-)
Any other questions at this time?