Epilepsy and tonic clonic seizures

[highdaysandholudays]

My son is 17 and started having seizures about a year ago. He has one about every three weeks. He’s on 1000mg of levericetam. He had one last night. I’m in touch with the epilepsy nurses and they are going to review his meds. He’s had mris and an eeg. His neurologist think he may have focal cortical dysplasia. We are awaiting the results of a more detailed mri to confirm this. I’m just putting this out there because i feel quite overwhelmed with it all. He’s got no other symptoms. He’s struggled academically but he is dyslexic and I think probably has adhd. He’s personable, resilient and smart in many ways. It’s just horrible to witness him having seizures. I’m just chatting. I don’t expect answers from anyone but I just worry so much.

It's just so upsetting and frightening to witness your child have a seizure isn't it. Sometimes I lie away at night sick to my stomach he's got this burden in life. When hes had a big seizure i jusr want to curl up in a ball and scream.

How are you?

Drained. I worry so much that I dream about him having a seizure. Last night everything was normal. He was eating a bowl of pasta and we were doing a jigsaw and chatting round the table with my daughter’s boyfriend. My son went upstairs and lay on his bed and shouted up to me he was going to have a seizure. There was no warning beforehand.

I can absolutely understand that. I too dream about my son having seizures. Wakes me up sometimes the panic i feel during those dreams

His started just over four years ago. He's now 18 and has about four focal seizures a week - misses one dose and he'll have a tonic clonic seizure. He sounds very similar to your son (struggles academically, dyslexic, resilient, personable and smart in so many ways).

I have a teenager with epilepsy who is also photosensitive. As a PP said, misses a dose or two and has a tonic clonic seizure. I always worry. Sending big hugs to you all xx

Hugs to you all also. Thanks for responding. The feeling of being unable to help or protect your child from this thing that comes at them with no warning is just awful.

Just wanted to send another hand hold. My daughter is 19, and had her first seizure at 17, your son's age. Hers are generally well controlled, but full tonic clonic when they occur.
We were in hospital with her last weekend after a particularly bad one that just went on and on, and I don't think I will never get used to watching her have them.
I completely get it. It's just so hard not being able to do anything to help them, isn't it. Living with a child with epilepsy is stressful, tiring, and just really upsetting. Please look after yourself too.

Thank you @Sooverwinter. I hope your daughter is recovering.

My DS also has epilepsy with his first known tonic clonic seizure at age 15. Ages 17 to 20 were so difficult for him. He was clocking up fortnightly hospital admissions at the peak.

He’s now 22 and is very stable, thankfully. He has made considerable lifestyle decisions to get to this stability which I admire hugely.

I find the post-seizure recovery the hardest. As one epilepsy nurse explained, they are recovering from a type of injury each time. Logical thinking, mood, energy, are affected.

@Wond3rmentthis makes sense. It looks so violent when it’s happening to them. My son gets very emotional afterwards and he’s not really like that usually. He gets euphoria and then teary.

Post recovery was explain to me in very simple terms - rather than medical terms - that a seizure is a massive amount of electrical energy the brain suddenly emits and the body needs to expel that energy somehow - hence the shaking of the body in a tonic clonic.

Each seizure they have uses so much energy it's like running a marathon and exhausts them mentally and physically just like running a marathon would.

Also jumping on for mutual support. My son had his first seizure just over a year ago, the day before his 18th birthday. He was in hospital for 5 days as on admission also had an acute kidney infection, which the doctors thought may have caused the seizure. So no meds prescribed at that stage although he was advised to make some lifestyle changes in case it was epilepsy. His next seizure wasn’t until December, when was was put on keppra. He is very academic but suffered memory loss after the first seizure so tool the tough decision to retake year 13. We had hoped the keppra would be effective but he has had breakthrough seizures - always tonic clonic - in March & last week. He has taken two A level exams this week, a great achievement given that he was still in the acute assessment last Thursday & we didn’t know if he’d be well enough to take them. He’s determined to get to university in September - was very disappointed to be left behind last year & has had some low times thinking about this & future challenges. As if being 19 isn’t hard enough…I feel so sorry for him & the other DCs going through this. My perception is that very little money goes into researching new epilepsy drugs & resources are spread very thinly.

There is a dog charity that supply dogs to people to warn them they are going to have a seizure - this might be something you want to look into.

It is very scary - have you asked for genetic testing for your son and for yourselves?

Also have you come across the https://www.roalddahlcharity.org/get-involved/do-something-marvellous/why-epilepsy/ I realise that your dc maybe nearly adults but maybe worth contacting for advice