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?

My dd had seizures 3/4 times a week. Sometimes multiple daily between the age of 1 and 7. She was on medication daily and had medication to stop the seizures.
she’s has been fit free now since the age of 8, off all medication since the age of 10 and is in her 20s driving, and doing everything every other adult does.
its a horrible scary time I really feel for you

Sorry to hear that op. Dd was diagnosed with epilepsy at 4, I didn’t know much about it at the time and was convinced it was a brain tumour. It was awful. Her face would twitch and she couldn’t breathe and then the side of her face would drop afterwards. I was convinced that one day it would stay like that.
Dds trigger was sleep deprivation. She had a sleep deprivation EEG and that induced a seizure. She was diagnosed with benign Rolandic epilepsy.
we would find that she would have clusters of seizures towards the end of term when she was exhausted. The specialist said we could choose to medicate if we wanted to, we left it for a while but then the number of seizures increased so we decided to medicate. After not having a seizure for 2 years from the age of 10ish we weaned her off medication and she’s never had a seizure since. Fingers crossed it’s something that your dd grows out of. I remember dd having 2 in one night and I just sat there and sobbed, it’s so awful to see.

I was diagnosed at 18. I’m stable and medicated in my 50s and able to drive.

This is great to hear too… I’ve gone down the rabbit hole of thinking that my daughter’s options in life will be limited but I’ve had words with myself for the negative thinking. When in hospital one of the members of staff told me they experienced seizures too and it is reassuring that people with epilepsy can lead normal lives

Very good advice. Everything about some of their experiences seem so alien when we have our beloved NHS and some amazing nurses and doctors to rely on

Thanks @socks1107- that must have been terrifying for you too but so pleased to hear about your DD, it’s really reassuring

So so awful. I’ve never been so frightened in my life when it first happened and no doubt you felt the same. Again I’m taking massive comfort in hearing positive outcomes like your DD’s. Thank you for sharing

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.

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.

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.

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

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.

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!

They really drive the message home about sodium valproate. The leaflet they gave me said to make sure if I have a daughter that she’s on contraception but I don’t have to worry about that just yet as she’s only 2. That’s brilliant that your DM hasn’t had one in 30 years- hearing things like this is exactly what I need

No doubt you were terrified. Really interesting about the chicken pox link as well! Surely it can’t be a coincidence

Maisie Adam.

Look at her career. I'd call that a positive story about someone who has epilepsy.

Wow. Amazing that they stopped but no doubt very worrying for your family when they were happening

I had a few fits when I was a child around age 6-7. Diagnosed epilepsy and then I seemed to ‘grow’ out of it. I’m 33 now and I haven’t had a fit in around 17 years

I have epilepsy, medicated with Levetiracetam and am living a busy full life. Am able to drive. Side effects from medication are minimal.

I cannot begin to imagine how utterly terrifying and awful that was for you- especially the duration of them. And then having to battle in terms of Doctors’ responses.

With my DD I was hoping that they were febrile given her chicken pox and covid. She had 3 tonic clonics in a day, 2 of which whilst in hospital. They didn’t last any longer than 5 minutes (although that seemed like a lifetime). She then had another 5 days later and once they ruled out encephalitis diagnosed epilepsy- I think because of the number of unexplained seizures without an accompanying high temperature. She still needs an EEG but how they will manage that I don’t know because she rips off anything put on her head

Dc outgrew his. Kept on same meds during childhood once hit around 14 they stopped as dosage was so low for a teen so he outgrew it

This is so helpful- thank you @Hooplahoophoop- I’ll look into getting these into her diet/supplements. I know ketogenic is hailed as an option where there’s med resistance but my DD is a fussy eater at the best of times and fingers crossed she’s not med resistant

Child diagnosed at 5. Got put on medication . Seizures stopped almost immediately and weaned off meds at 8. Has not had any seizures since.

This is wonderful to hear. I suppose medicine/research is evolving all the time as well which can only be a good thing

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