To want to hear some positive stories about epilepsy

[Goldenmimx]

Was hoping for further reach by posting here.

My 2 year old DD has just been diagnosed with epilepsy. She had 3 seizures in one day and another 5 days later.

Consultant paediatrician seemed positive that she could be weaned off medication in 2 years and there’s some positive statistics about children managing to ‘grow out’ of epilepsy by their teenage years.

However, everything I’ve read online seems so scary and daunting. So what I’m hoping for are some positive stories from people with epilepsy or from parents with children with epilepsy. I’m so on edge thinking she’s going to have another seizure. Anyone know of children that eventually went into remission from epilepsy?

Do they know the cause? My DC had epilepsy caused by focal cortical dysplasia. They had brain surgery and are now seizure and medication free.

Thanks for your reply and that’s wonderful they are seizure free. It’s still early days in terms of the diagnosis and she has an appointment with a neurologist in a couple weeks. So far just been told it’s generalised idiopathic but she hasn’t had an EEG yet

If it helps, my husband had fits as a child and is now in his 40s and hasn't had a fit in 20 years. He stopped medication about 15 years ago.

My daughter had quite a run of seizures before the age of 5. There was activity at age 2-5 then only one in puberty. No explained pattern or clear diagnosis. My friend’s daughter had around 4 during early puberty, none now for a few years

Thanks @ImImmortalNowBabyDolland @Omgx - both reassuring to hear. That must have been really frightening for you @Omgx- for all intents and purposes my DD is totally fit and healthy and it was such a shock when it happened. She’d had chickenpox and tested positive for Covid in hospital so I thought it was connected to that. I’m learning that epilepsy is more common than I realised

I had Petite Mal (absence seizures) as a child. Diagnosed at around 9, weaned off medication at 17 and never had another since. Mine was obviously milder than your DD.

There seems to be such a spectrum but I’m really pleased to hear all experiences and it’s great you’ve been seizure free since 17

My daughter had Rolandic epilepsy with focal seizures from the ages of seven to eleven. She grew out of it and is right as rain now (16). The only side effect, and I do think that it is a side effect, is quite marked adhd.

DD had BRECTS diagnosed at 5 but we are sure from birth - which she was medicated for till she was early teens. Now 24 she has been seizure and medication free long enough that she is even allowed to go scuba diving.

5 yr old DS finally diagnosed at 4 and been on meds for a year. Had been having partial focal seizures since 1 yr. Now on meds and mostly seizure free (hard to tell but the before / after changes are marked and have definitely decreased! Also ADHD. You can tell if he hasn't had his carbemazepine - no idea if that is epilepsy or ADHD related. But fingers crossed he's going to grow out of it.

@Goldenmimx what a distressing time for you all.
My ds was hospitalised with febrile convulsions caused by a very high temperature at age 2. The doctor said this was common at the age up to five years, (when presumably there was more/better body temperature regulation) Are they definitely saying it's epilepsy (I thought a scan was needed to determine that, but not entirely sure)
Best wishes.

The doctors think I grew out of mine at 11

(They never actually diagnosed me and told my parents they were imagining it. We found out years later that I had it)

My DS had absence seizures in primary school, then was seizure-free and came off medication through most of secondary. Had a couple of grand mal seizures in his teens and went back on meds. He’s not had a seizure in a few years now as meds control it well, he’s well enough to drive and do all aspects of his job kitting out events and staging, and running sound/lighting for club nights and gigs. There are loads of options for medications these days, and different ones suit different people.

FIL is well into his 80s with photosensitive epilepsy and is in very rude health. Im not sure if he has seizures much now as he's quite quiet but he is off on planes with his GF and driving regularly very happily. I know he had a lot of seizures when he had small DC and a demanding job from stress but overall he's had an amazing life, travelled all over the world. It did sadly prevent him from achieving his dream career but he was a successful businessman and has no complaints!

My dd was also diagnosed at 2 years old. She had a series of seizures over several months and was diagnosed off the back of a video of a seizure.
She was having tonic clonic seizures.
She hasn’t had a seizure in two years and is on no medication at nearly five years old.
I really hope you have a similar outcome.

My dd had seizures white a bit from 2-4 then sporadically until 15 (went through puberty late) nothing since. Dsd has severe epilepsy however since 6 months old. It’s a wide spectrum and many causes too

Also to say I read a lot on line saying it’s likely she will have learning difficulties with epilepsy but she is doing fine- her teacher has no concerns.

My sister was diagnosed with epilepsy at about 20. She did have a rough ride for a good few years. Eventually they sent her to London, took her all off her meds, and monitored her for a week. They were planning on surgery, but they changed her medication. Touch wood she hasn't had a fit in about 15 years. She's driving again. She use to have a lot of grand mal seizures and a loads of petite mals.

I know it will all seem overwealming as your dd has recentley been diagnoised. You will have so many questions and worries.

My daughter was diagnoised with nocturnal epilepsy when she was 9, when medicated she had a 1 seizure, she was on her meds for 4 years and has now been seizure free for 5 years and med free. They put it down to hormone changes.

Please also look after yourself x

Thank you @thecatdidit- I was convinced it was febrile given she’d been ill and that Covid obviously causes a temperature but I think because her temperature was normal throughout they dismissed that as a theory. But then I’ve never known my DD to have a fever before. I had thought you’d need an EEG to diagnose especially as her CT and MRI were normal but the paediatrician was a bit dismissive about what it would show.

That is so reassuring to hear - this is the outcome I’m hoping for. My DD’s seizures were all tonic clonic

My brother and I both had/have it, I was weaned off medication by age 9, his is controlled by medication and he lives a normal life, can drive etc.

Thank you to everyone who has posted- it’s really reassuring to hear that it is possible to live relatively seizure free despite a diagnosis. It’s all brand new territory to me and I never knew it was possible to go so many years without a seizure so I’m cautiously optimistic. I also need to stay off Reddit where the stories on there seem so sad with people really struggling with it

Former hospital doctor here. Have in the past had doctor colleagues who have epilepsy , work made reasonable adjustments such as not doing nightshifts as the sleep deprivation can be a trigger. Not sure if this is what you were asking for in your thread but these were successful, thriving professionals. Wishing you all the best OP

Re Reddit I’d try to stick to UK threads. When I’ve read threads where posters are American it really is a different life experience when it comes to medication/access to health - they can’t necessarily afford or get covered for certain medications etc.