Advice for son recently diagnosed with epilepsy

[Lindylou77]

Hi I'm new to this group my 13, year old son was diagnosed with epilepsy 4 months ago he's currently on medication and doing well to be honest handling it so much better than myself how do you handle the complete fear of seizures happening again just so terrified and can't seem to get thru a day without worrying so much any advice would be appreciated thanks

[Kjd19]

Hi,

I’m Not sure us as parents we do, my son had his first seizure around 5 months ago aged 18 .

He has also taken everything in his stride but I wake up every morning with the worry that he have another as he had 4 but only within 20 mins of waking.

My only advice would be to read up on the diagnosis , try and ensure you are aware of the first aid appropriate if it does happen again and gain some coping mechanisms for yourself.

Some good advice on here of trying to not let it run your life , that like any diagnosis we need to learn to live with it and not define your child or yourself .

I know easier said than done but does get easier as the weeks go on.

[Lindylou77 in reply to Kjd19]

Thanks I appreciate your reply I think it's so difficult I know I'm my head that I can cope if it does happen but just constantly worrying about it happening if I'm not there, he has medic alert, I know in my head he will be ok just can't shake the fear I live with every day

[Kjd19 in reply to Lindylou77]

it does ease, the longer they go without a seizure the easier it gets -it’s always in the background but the more you know about triggers -removing them and then hopefully you can get some piece of mind 🙏🏼 and the positive is that our kids seem to be unfazed whilst realising we are like swans -calm outside and peddling furiously under the water .

[Lindylou77 in reply to Kjd19]

Yeah that's definitely true other than tiredness being a trigger not sure of any others as yet, it's definitely a positive that my son is unfazed by it and just getting on with it☺️, hopefully i can start to be a bit calmer as time goes and hopefully the medication keeps them at bay.

[Slof in reply to Lindylou77]

Hi, similar to Kjd, my son was diagnosed a few months ago aged 17. His seizures were terrifying and like Kjd19s son they happen on waking. I found myself getting up every time I heard a noise to make sure he wasn't having a seizure! I put his mattress on the floor as his seizures were so violent. Like both your boys, he's taken the diagnosis in his stride even tho he hasn't been able to start driving lessons and has stopped drinking. Luckily his medication has worked so far and that has helped reduce my worry/stress levels. The longer he is seizure free, the easier I have found it to get back on an even keel.

[Lindylou77 in reply to Slof]

My son's seizures don't happen at a specific time but can be triggered through lack of sleep, I've resorted to putting a baby camera in his room and any movement then sets it off which means I constantly wake when the monitor lights up, just hope in time I can start to relax a little more

[KezzaCM16 in reply to Lindylou77]

I totally understand where you’re coming from, my daughter is 16 and recently diagnosed after having 2 seizures (that we know of) within a couple of hours of each other. I couldn’t sleep, I was constantly checking up on her, it was ruining my everyday life, I was traumatised, it consumed my every thought, but as someone has said as the weeks go on you become more at ease, the fear doesn’t leave but I think you are more emotionally prepared for it as time goes on.

[Lindylou77 in reply to KezzaCM16]

That's exactly how I feel some days I feel completely crippled with fear and anxiety, I constantly ask him if he's ok think I get on his nerves to be honest but just can't seem to relax at all always on edge.

[Slof]

My son refused a monitor! When he had his seizures, I was terrified. I couldn't sleep, couldn't concentrate at work, was so stressed all the time but it has got easier. Unfortunately, there's no advice I can really give. I think being able to contact people that understand helps as you can feel alone. Epilepsy Action has a helpline if you wanted to speak to someone - and keep using the forum!

[Lindylou77 in reply to Slof]

Even just having someone reply to me has helped a little knowing I'm not the only one going through this I appreciate your reply thanks

[Hidden]

Hi, my son was diagnosed at 16 now 18. Initial seizure August 2021 after a sleepover with his friends. Another March 2022 and then another 4 up to September 2022 until his medication was changed. I worried myself sick I just couldn’t get my head round the diagnosis. Over a year later and no seizures I do still worry but not to the extent I was. We’ve had a lot of firsts since his epilepsy diagnosis. Started College , debs ball, exam results nights out, went on a lads holiday( I had no say in this), staying away for nights out with friends and ultimately he got through everything and he was fine. I did dread the weekends for months and the thought of Christmas parties etc made me worry non stop. He like your son takes it in his stride he knows we worry about him is good to take his medication and contact us whenever he has been away for a night. I think they do probably think about epilepsy themselves but have to keep going as really there is no other option for them. Things that helped me: reading positive stories. Letting my son do new things as it gives you more confidence the next time that he will be ok. Making sure he takes his medication they do work for the majority of people (I was sceptical at the start). Talking to his friends, letting them know what to do if anything were to happen. My sons friends wanted to know just in case and thankfully do not treat him any differently. I hope everything works out for your son and he has a great life. Epilepsy is so difficult xxx

[Lindylou77 in reply to Hidden]

Thank you so much for your positive reply it's so difficult at the moment to let him do anything on his own, he takes his meds no problem and has medic alert which puts my mind at ease a little bit I'm just finding it difficult at the moment to stop the fear and worry with everything that he does, I know in time this will get better just wish it would happen soon x

[wxy123]

Ask your epilepsy nurse if there is a local group you can join or if there is any way to get in touch with others locally with epilepsy. this is helpful for both you and your son. Good luck.

[Lindylou77 in reply to wxy123]

Thanks I've been trying find groups near where I live but can't seem to fnd any, but going to speak to his epilepsy nurse at his next appointment see if they can help

[carlija2]

My son has had epilepsy since he was 2 now 35. Sadly his medication doesn't control his completely but as others have said join groups like Epilepsy Action for information support and advice. As with our children whatever age with epilepsy or not we will always worry about them. That's what Mums do. Wish you all the best . Jackie

[rachelhyke]

Hi, I can tell you it does wear off- I have 2 kids with epilepsy, and with both of course the beginning was the hardest. My daughter has done really well with her medication (has been on them for 5 years now) but weaning off them has been tough again- and my son's only seizure was traumatic! Luckily with him we knew straight away what was going on. He has emergency medication though, which we also leave at school and his after school club- but in the beginning I couldn't leave his side and wanted to go to school with him if I had to ;). Hopefully you're feeling better again (and so has he!)