To want to hear some positive stories about epilepsy

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 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

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?

Get her iron levels checked, my son's improved once we got on top of his anemia (didn't know he was anaemic, likely due to the seizures themselves and repeated illnesses apparently)

My son with chicken pox had 3 seizures in a day/night, each individual one 20 minutes long and STILL couldn't get neurology follow up or treatment plan. It was truly awful, treated like we were being a nuisance for not just accepting 'some kids get febrile seizures'

It's worth also mentioning if she has a sensory issue around things on her head, my son is on the waiting list for ASD assessment and it's increasingly looking like he will be given a diagnosis. I go back and forth over the chicken and egg of the autism versus the seizures but honestly lean towards the autism coming first. Autistic brains have lower seizure thresholds according to our neurologist.

I dunno, it's been one of the worst experiences of my life. I'm not sure I'll ever fully recover but it gets easier every year and actually it helps be cope with the worst of the ASD issues because my brain always comes back to 'thank God he's here'

Good luck and time will pass and you will start to recover from the initial sheer terror. One thing our hospital really got right was they referred me for counselling in their kids service and it was life changing. Highly recommend

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?'

I have it, started in my mid 20's. Am medicated and haven't had a fit in about 15yrs. I'm a senior nurse, have had 3 children without any complications and it makes absolutely no difference to my life apart from me just needing to be careful that I'm getting enough rest and sleep - I also hate strobe lighting but that might be my age!

There are nutrients that ca make a big difference. We saw a reduction of seizures once we got blood vitamin D levels to 150nmol/L; lots of research on the positive effects of vit D on epilepsy. Selenium and carnitine are other important protective nutrients. We also saw a big reduction in seizures from adding a low dose of soluble fibre (Sunfiber/PHGG). I've seen research suggesting that probiotics are also very beneficial, and lymphatic stimulation eg dry brushing.

That doesn't sound right at all, did she have a fever?

To diagnose clinically a child needs to have had 2 seizures in an absence of a fever before its epilepsy. Otherwise it's febrile seizures or given she has several at 1 episode and assuming they were prolonged it's febrile seizures plus which was my son's diagnosis.

He had his first at 7 months then ever fever he had a seizure and they weren't seconds they were 10 minutes to the last one he had was an hour and we spent that hour in resua unsure he'd make.it.

I'm in 2onds about your situation because if my son had been taken seriously and medicated after they realised he was having prolonged seizures every 4-6 weeks he'd have been spared the worst of the seizures, the massive amounts of anti seizure meds it took to bring him out of his status epilepticus and the side effects of all that. Then he was medicated, once he was 2 yrs seizure free and had his tonsils out and the frequent fevers stopped we weaned off meds when he was 6 and he's 8 now and so far no seizures since.

I'd be demanding an EEG though ,your doctor sounds like she's not sure what she's doing

The stress is awful. I was in survival mode for years dealing with doctors who seemed to thing the problem was my anxiety not the fact his seizures were so severe he kept ending up in resua. It was as if in a and e the urgency was clear but by the time it filtered to neurology the information was so diluted he was dismissed. Then he got a new neurologist after his last seizure and it all changed.

Good luck with it all, it does sound like febrile seiUres in your car but when it's multiple prolonged frequent seizures our neurologist said it OS epilepsy at that point, it's frequent epileptic seizures and status epilepticus. It's not this benign thing like kids whose eyes roll back for 30 seconds and then they recover immediately

My sister had epilepsy caused my a brain haemorrhage when she was a baby. She used to have countless seizures a day resulting In most of her childhood spent in hospital. Eventually they were controlled with medication. When she hit puberty, the seizures stopped. I think she was about 11. She’s 46 now and not had a seizure since.

My daughter’s first was chickenpox, a few days before the spots came out. I know someone else whose else had seizures without a fever with chickenpox too.
My daughter’s first she became very vacant, unfocused and a high pitched soft- singing. I rang 111 and whilst on the phone she had a grand mal and didn’t come round fully until in hospital. She had two more in hospital, she was in there for a reaction to chickenpox-cellulitis, high temp. She had absence seizures on and off and some partial ones too, but no pattern. One eeg was clear and the next showed post seizure activity but nothing clear.

Not children experience but my DM has it. She hasn’t had a grand mal seizure in over 30 years and is in a good place now medication wise.

Epilim was v bad for my DM (on it far too long) and was harmful to my DSis in utero. Not trying to frighten you, but to be aware of when your DD grows up that sodium valproate can be v harmful in pregnancy. But hopefully your DD will indeed have outgrown it.