Epilepsy- seizures

[calmfig]

Hi all x
The Saturday before last my son had his very first tonic-clonic seizure, called the ambulance, went to the hospital and all tests came back fine. Fast forward exactly one week later and he has another one, once again we go to the hospital, all tests come back fine and he has now been put on Keppra. All this has come as a massive shock and I'm beyond anxious at what the future holds, reading forums and other stiff online has just made things worse, as all I'm getting are the horror stories. Obviously anything can happen to anyone at any time and no one can say for sure how life is going to be but I would really love to hear the other side of epilepsy, about people who have it or their children have it and they are living normal lives and managing it fine. Support and just being more informed is also why I'm here.
Thank you x

Awww poor him
Sorry I don't know a lot about epilepsy but I'm here if you want support

Hi, my son had 3 tonic clonic seizures over the space of about 4 weeks. He was put on sodium valproate and never had another seizure.
I was terrified at the time, got him an angel monitor as his seizures had all occurred around sleep and watched him like a hawk in the early days. All his tests couldn’t find a reason so it was classed as idiopathic.
We made changes around his play (advice from consultant) so no climbing frames, caution on stairs etc, he was too young to be taking baths on his own so that wasn’t a problem.
He was on medication for 2 years and then slowly came off it. I remember being cross at his consultant, thinking he would cause him to have another seizure by coming off the meds but he (obviously) was absolutely right. My son is now a teenager and not had another seizure, we were told to be cautious around puberty as might set it off but he has been fine so far.

I found the meds affected my sons mood and caused aggressive behaviour (he was very difficult to handle at times) but went back to his usual sunny nature with time.

I’m here for support, I know how scary it can be 💐

Hi
DD takes Keppra for seizures though she’s never had a tonic clonic seizure. Hers started when she was about 11 and escalated - though slowly - until they decided to medicate her this time last year. Keppra has been great for her and she has only had one seizure since she started on it. The first two weeks were miserable as the side effects were severe (exhaustion, depression, nausea) but they settled down quickly.
I know several children who’ve had tonic clonic seizures and now have it well managed with medication. Did your ds have an MRI and/or EEG? It must be very worrying for you, but I hope the drug will bring it under control.

Hi OP,

My LO had her first seizure at 18months, following which she was referred to the first seizure clinic. They said because she was so little, she has no developmental delays, that this can happen just once for no obvious reason and they wouldn’t run any tests. Sadly she had another seizure at 22 months, at which point she had an eeg, and a further seizure at 23 months. It was discovered she has impulses on one side of her brain and was diagnosed as having focal epilepsy and was put on Tegretol.
She had an MRI at 2.5yrs old- thankfully nothing suspect found. It does mean we have no idea why she has these impulses but that she could grow out of it. We see our consultant every 6 months, she’s had no further seizures and they will run a further eeg with the aim of weaning her off medication around 4yrs old.
It’s a scary time but tbh day to day life is as it always was, just a couple of doses of medicine. The staff are amazing and we have an epilepsy nurse specialist who I can email/ call and will advise on anything eg, travelling and changing medicine times.
Wishing you and your LO all the best OP

Heya my partner was diagnosed in his teen and had around 50+ seizures a day on his worst days, he's on different epilepsy meds but his seizures are now well contained as a 30 year old man, he'll have the odd seizure about once a year but other than that perfect fine :)

I will just point out that he said when he was younger the doctors and his parents didn't believe him when he was having horrific hallucinations as a side effect of his meds and he ended up very suicidal and aggresive at one point, this was due to a change in meds in his late teens so just make sure to listen to your child cus his doctors kept telling his parents that he was just going through puberty and making things up for attention and they believed the doctors over him, he ended up going to aa pretty dark place and making bad friends as he couldn't find any support from his family

@NekoShiro @OnlyFoolsnMothers @TolstoyAteMyHamster @16fairies @SaoirseTheLeprechaun
Thank you to all over you for reaching out, the offer of support and insight I definitely feel less alone and great to not just see horror stories. My kids are my life and whatever they go though I feel it with them and feel it even more and with something like this it's important to get both sides of coin, the internet is a blessing in some ways and in others can put the fear of God in you! Wishing you all and your families great health I will update here so it helps others too.

I was diagnosed with epilepsy at 13 (now 33), I was eventually put on Keppra after Lamictal didn't work, they monitored and rose my dosage- capped until I was 18 so it didn't damage brain development. I had further scans and tests as an adult and they increased the meds. Pretty much tonic clonic seizure free for 10years now- too much alcohol is the main thing that sets it off- so I don't drink excessively! I still have mild absence seizures that last 1-2 seconds, but this still prohibits me from driving. Other than that I live a fairly normal life.
My main irritation growing up was protective parents- as a teenager I saw this as annoying rather than they were just being caring responsible parents! I had my first TC seizure at 16 and maybe once a week for 2yrs, usually in the mornings due to the gap in taking tablets at night and the next dosage.
I find many forums show extreme cases and there are minimal examples of cases that are controlled.
Being the person having the seizures, rather than the parent, I can't imagine How frightening all this must be. It might take a few hospital visits, but hopefully the doctors can control it and all is ok.

Hope that helps a bit x

@Charlotte2020 Thank you for sharing your journey.
As the parent and the one that's seen the seizures it's very frightening and heartbreaking, so it's very hard to not be over protective. At the moment it's okay because we are on lockdown but once that's lifted and he starts wanting to go out again I'm going to find that very hard. I will do my best not to make my fears so apparent, as I am sure it will annoy him like it did you and make a bigger issue of it all plus I don't want to keep bringing it up and reminding him of it.
I pray hard everyday, take one day at a time and with each day that goes by smoothly I am truly grateful 🙏🏼 x