We've just been in for by a letter from hospital that following our sons EEG he's showing traits that indicate he suffers from photosensitive epilepsy. We are awaiting a consultant appointment but in the meantime I am at a loss as to how to prevent his 'episodes'. I have banned Xbox and iPad use. But he's had an episode today after a day of feeling fine and cycling yesterday! I just wondered if anyone's children had this problem and what the triggers are??
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Children's health
DS been diagnosed with photosensitive epilepsy and I'm completely ignorant as to how to manage it??
18 replies
Millie04 · 17/04/2017 15:25
OP posts:
Scribblegirl ·
17/04/2017 15:28
How old is DS? DP has epilepsy (though it came on in adulthood) and a big trigger for him is exhaustion. Don't know whether that would be relevant though. Just to give you some reassurance, DP is four years since his last seizure after eventually getting the balance of medication right, and lives a really normal life (driving etc) - 
for you though, must be really worrying. Hope you get the specialist appoint soon.
Scribblegirl ·
17/04/2017 17:13
He does fine he yawns uncontrollably about an hour after and sometimes they make him a bit jittery, but nothing horrid! He was dx'd at 20 and we met when he was 24, it took a long time to get his medication right but he's 30 now and it's been 4 years since his last. He'll be on medication for life and I'm always on edge waiting but aside from him taking pills twice a day and the odd bit of jitter you really wouldn't know. We avoid certain things for obvious reasons (although I don't think I've ever set foot inside a hardcore trance club, let alone in the course of our relationship!) and he can't do anything to get too exhausted - he had to quit a football club after he realised 90 mins of running was triggering - but he plays the odd game of five a side. Put it this way, he won't run the marathon but I don't have epilepsy and neither will I 
heavenlypink ·
17/04/2017 18:33
@Millie04 My son's seizure started when he was around 7/8 years old and initially occurred only during his sleep. I only became aware because he happened to be in bed with me one evening. I didn't medicate initially but as these episodes continued and school were concerned he was also having absence seizures he did start taking Epilim. Attempts have been made over the years to reduce/withdraw his medication but these have been unsuccessful - but as I said he does have an underlying condition that can cause epilepsy.
His seizures have. Changed over the years - as has his medication and as @Scribblegirl says it can be trial and error at first But on the whole no side effects, the effects of not taking them would certainly be worse.
Young Epilepsy have an app that you might find useful especially when you see the consultant. You can record details of seizure times, duration etc. I know you son will find it difficult but see if he can tell you if he is having any auras / warnings. Are you recognising anything? My son just gets this "look" and I know he's not right
Sorry this is long but hope it helps
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