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DS been diagnosed with photosensitive epilepsy and I'm completely ignorant as to how to manage it??

(19 Posts)
Millie04 Mon 17-Apr-17 15:25:17

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??

heavenlypink Mon 17-Apr-17 15:28:44

This is a good link

https://www.epilepsy.org.uk/info/photosensitive-epilepsy

Scribblegirl Mon 17-Apr-17 15:28:58

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) - flowers for you though, must be really worrying. Hope you get the specialist appoint soon.

heavenlypink Mon 17-Apr-17 15:31:48

@Millie04 You don't say how old your son is but this site is a good source of advice and info for both of you

Millie04 Mon 17-Apr-17 15:34:07

Thanks both. DS is 9. I'm feeling v disheartened about this diagnosis at moment.

Millie04 Mon 17-Apr-17 15:37:00

Thanks@heavenlypink and @Scribblegirl that's really useful advice. I've already started to worry about his ability to drive etc. I'm hoping he might grow out of it but at present his episodes are escalating in regularity.

heavenlypink Mon 17-Apr-17 16:01:58

@Millie04 He is unlucky to for his seizures to be triggered in this way - Contrary to popular believe only a small percentage of people seizures are. My son (is older) has other issues relevant to his epilepsy but other triggers for him are sleep (lack of) and stress/anxiety

Millie04 Mon 17-Apr-17 16:26:27

@heavenlypink does your DS have medication for his epilepsy? My sons episodes are always the day after as well! Very confusing and difficult to clearly define the triggers.

Millie04 Mon 17-Apr-17 16:28:07

@Scribblegirl does your husband have any side effects associated with his medication?

Scribblegirl Mon 17-Apr-17 17:13:48

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 grin

Millie04 Mon 17-Apr-17 18:19:14

@Scribblegirl thanks for your reply. My son loves football. We try to scale things back a bit but he's quite a strong player so gets picked for all the games. I've started saying no to some games. He'll be gutted if he has to cut too much out. I don't think he'll miss night clubs too much!

heavenlypink Mon 17-Apr-17 18:33:34

@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 flowers

heavenlypink Mon 17-Apr-17 18:39:11

These are the apps - I find the Young Epilepsy one more "user friendly"

Millie04 Mon 17-Apr-17 18:43:31

@heavenlypink thanks. When my DS has an episode I can tell as soon as he gets up out of bed. His last a whole morning. But they're not a typical fit. He just looks very out of sorts, barely speaks, looks confused and has involuntary spasms. He's s very different child and sometimes has to take 2 days off school as he's so exhausted. Normally it's after a weekend when he's been a lot more active doing all the things that 9 year olds should be doing.

Millie04 Mon 17-Apr-17 18:47:00

@heavenlypink those apps look a very good idea! I had the calendar out earlier writing down clear dates that I could remember.

amymel2016 Mon 17-Apr-17 18:47:48

I'm epileptic and was diagnosed at 15, I agree with the comment above that exhaustion can definitely be a factor. I've been seizure free for 11years now and it really doesn't effect my day-to-day life. I'm on medication (lamotrigine) with no side effects. The diagnosis is scary but they know so much more about the disease nowadays and the medication is so much better that it really can be manageable. If he's seizure free for a year then he'll be able to drive xx

EnlightenedOwl Mon 17-Apr-17 18:53:55

I have photosensitive temporal lobe epilepsy. 43 hold down full time job which basically involves nearly all day on computer screen. That said have regular breaks from screen - coffee breaks, photocopying, work not involving actively looking at screen. Have a screen filter which work have supplied - Seizure free but the key is getting the meds right - that can be a bit of a mare finding a regime which works. I don't drive but could as seizure free for many years. Blood tests every six months to check ok with meds i.e. checking liver kidney function and full blood counts. Oh, I don't drink alcohol as interacts with meds. Triggers include tiredness - I make sure I get a full eight hours and at weekends steal a cat nap in the day, also of all things strong chemical smells (Bleach!!) so avoid swimming pools/chlorine! Other than that totally normal lifestyle - education wise went to uni, got a degree. Had no issues with applying for and getting jobs. Hope this helps!

heavenlypink Mon 17-Apr-17 19:04:00

@EnlightenedOwl That's interesting on the smells

@Millie04 some of you son's seizure sound like the ones mine had. This will sound a bit daft - but you are 'lucky' something got picked up on the EEG - they were always negative in our case. Also I know it's the last think on your mind but if you can get a couple of video recordings of your son - sometimes it's much easier to show than explain.

EnlightenedOwl Mon 17-Apr-17 19:31:16

Yes I don't think cleaning would be the best career choice for me that said I've managed to use some products containing bleach but not too heavily scented of bleach without incident so hopefully some improvement in that direction!

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