Active discussions

Please or to access all these features

Talk
AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

Original poster

To want to hear some positive stories about epilepsy

63 replies

Goldenmimx · 07/06/2026 16:35

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?

OP posts:
InMySpareTime · 07/06/2026 19:18

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.

TigerRag · 07/06/2026 19:17

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)

thecatdidit · 07/06/2026 19:11

@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.

Nodwyddaedafedd · 07/06/2026 19:10

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.

Carryitjoyfully · 07/06/2026 19:01

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.

sighbynight · 07/06/2026 18:56

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.

Original poster
Goldenmimx · 07/06/2026 18:53

Loulou4022 · 07/06/2026 18:40

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

OP posts:
Loulou4022 · 07/06/2026 18:40

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.

Original poster
Goldenmimx · 07/06/2026 18:36

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

OP posts:
Omgx · 07/06/2026 18:27

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

ImImmortalNowBabyDoll · 07/06/2026 18:09

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.

Original poster
Goldenmimx · 07/06/2026 17:59

SurleyTurnip · 07/06/2026 17:47

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

OP posts:
SurleyTurnip · 07/06/2026 17:47

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.

Swipe left for the next trending thread