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?

Thanks @fiesta@Hankunamatata@ThatJadeLion@pinksheetss- all really positive and absolutely what I needed to hear

@LlynTegid I will definitely check them out

Your daughter is the same age I was diagnosed. I'm 40 now still epileptic and I get no support from society.

I won't lie to you she's in for a tough ride. There is anger and pain but you also become tougher then steel. Some grow out of it but it's not as common as I'd like to say. I gave up on that at 25. No matter what happens never let her see herself as disabled. Julius Ceasar was an epileptic. Instead of saying 'what life do I have?' I say 'what life can I build?'

My son was originally prescribed sodium valproate but then they wanted to give him a different med as sodium valproate was completely removed from paediatric use by our NHS trust due to research suggesting it might cause infertility.

I’m sorry this was your experience. I’ll definitely try to adopt that mindset

That was really progressive of them and it should be something they do across the board. I’ve been thinking about it to be honest just to manage my anxiety for her benefit.

Thanks for the tip about iron levels, I’ll ask at her next appointment.

Yeah I have read about the link with ASD and epilepsy… at the moment I think my DD’s issues with things like wearing hats just stem from being a toddler but it’s not something I’d completely rule out

I have been recently diagnosed with Epilepsy,
I had several tonic clonic seizures over one evening 5 years ago, and that was classed as one episode and nothing for just over 5 years, then a month ago I had another episode though this was worse than the first time. Prior to these 2 episodes I had been fine, never had anything as a child.
I had a MRI 5 years ago that was all clear and the consultant said I don’t need another one and also said it would be very unlikely anything would be picked up on a EEG unless I was having a lot of activity so pointless in doing one. She said anyone can have 1 seizure but once you have 2 or more it’s a diagnosis of epilepsy.
Did they say that her seizures were provoked or unprovoked? And has she been put on medication?

I was diagnosed at 19, it was a rough few months but it was controlled fairly quickly through medication.

I couldn't drink large quantities of alcohol which made me a bit depressed at University and I can't go on the pill. However, I have lived a relatively normal life. I drive, I work in a professional role, I travel, I can still drink some alcohol and am on medication that won't cause any birth defects in children.

Can I ask, is it due to the medication you can’t drink large quantities of alcohol, or is it because it triggers seizures?

Must have come as quite a shock to you. I was so naive thinking you are just born with it but I’m learning it can happen to anyone at any time. They said my DD’s were unprovoked and she’s been put on Keppra so going to see how that goes. Similar thing said to us about an EEG

I think the hardest part is not being able to drive, last time it was 6 months but this time it’s a year. I’m a fiercely independent person, and now have to rely on my husband. I used to do the majority of the school drop offs and pick ups as I was going out to the office anyway.
I think for me in my mind it’s how can it be epilepsy when it’s only been two instances in just over 5 years. To me someone who has epilepsy is someone that has seizures a lot more frequently.
my seizures were also unprovoked, but both times I’d been drinking (I don’t drink often).
my children were also present and saw some of what was happening, as it took a while for paramedics to arrive and also for me to be stable enough to transport.
I do feel lucky that both times I have been at home and I do have a fear of it happening in public.
I hope your daughter continues to do well and hopefully she will grow out of it x

My DD was diagnosed 3 years ago at the age of 12. She has tonic clonic seizures and absence seizures. Almost totally controlled by medication now. It’s taken a couple of years to find the right meds but she’s pretty stable at the moment. It is terrifying. And yes, stay off internet forums. Especially American ones. Utterly depressing.
At such a young age she is in a good place to likely grow out of it. Sadly probably not the case for my daughter.
It is the most difficult thing I’ve had to deal with but she’s amazing!

I can’t begin to imagine how difficult that was for you- especially coming as an adult when you’re fully established with your freedoms. You must have been really worried for your DC as well. I’m similar with the disbelief- it just never occurred to me that it can just happen and happen to anyone. I hope you continue to be seizure free and the time passes quickly to when you can drive again. Thank you for your well wishes x

Thank you. And you’re right- it definitely is the hardest thing I’ve ever been through. I hope your daughter continues to do well and I’ve certainly taken a lot of comfort from the mumsnetters who have told me that they still live a full life with epilepsy