My daughter has absent epilepsy but over the weekend when we were in France she had a tonic clonic seizure. I am struggling to cope with this, the image of her is so clear in my mind and although I am strong and supportive with her I can't seam to process what happened.
Any advise would be gratefully appreciated xxx
Get a full diagnosis, CT, MR scans. Keep a copy of the CD and the report. Get your neurologist's diagnosis + a 2nd opinion. There should be a cause they can pinpoint to. Let your neurologist prescribe a course of treatment. Join your local self-help group to find out what other people with the same diagnosis are taking.
Thank you for your advice, much appreciated xx
My Daughter had her first tonic clinic seizure 4 years ago and it took me a long time to get the image out of my head. They’re awful to witness but even worse when it’s your child.The panic and dread of it happening again will ease in time but try not to think about it too much.
I would try to book in with her consultant though to discuss medication.
Hi. Thank you for you response, we saw the epilepsy doctor today and she said we need to 'watch and wait', my daughter is medicated for her absence so the doctor wasn't happy to change anything at the moment. The doctor also said that it is possible for a tonic clonic seizure to happen again. I just wondered if you were told this when your daughter had her first seizure? How did you prepare yourself for that? And if you don't mind me asking did she have another? At the moment watch and wait feels so unfair. Your advise would be much appreciated x
Hi lightfamily
It is a very difficult time for parents when their child has their first tonic-clonic seizure. Many parents find living with the uncertainty is not easy, but with time many find their own way of coping.
For this reason, we have the following information to help parents and their children learn and feel as safe as possible:
Childrens information epilepsy.org.uk/info/childr... includes stories and animations.
Parents information epilepsy.org.uk/info/childr...
Safety epilepsy.org.uk/info/daily-...
I hope on your return home you have managed to talk to our daughter’s epilepsy specialist, so they can review her treatment and look at other reasons for the tonic-clonic seizures to happened. They may suggest altering her epilepsy medicine dosage or suggest trying a different epilepsy medicine. epilepsy.org.uk/info/treatm...
If she is not under a specialist, you will need to ask your family doctor to refer her. The ideal would be to someone with a specialist interest in epilepsy, as there are many different neurological conditions, and neurologists tend to specialise in different ones.
They may be able to explain why she had this seizure but, in most cases, there isn’t an explanation for someone’s seizures.
I hope you hear from others on this platform, as sharing information and experiences can be a good idea. If you don’t hear from others in a similar situation, you may wish to try our other services.
Parent support group eventbrite.co.uk/o/epilepsy...
General face to face meetings epilepsy.org.uk/talk-and-su...
Facebook facebook.com/epilepsyaction
Twitter twitter.com/epilepsyaction
Newsletter epilepsy.org.uk/newsletter
Finally, if it would help to talk to our helpline team please do phone us. The Epilepsy Action Helpline freephone is 0808 800 5050. Our helpline is open Monday to Friday 8.30am until 5.00pm and Saturday 10.00am until 4.00pm.
Regards
Diane
Epilepsy Action Helpline Team
Hi. I have started a couple of courses on the Epilepsy Action website & done some online research but could you tell me is it quite common for people with absence epilepsy to have tonic clonic sciezures? Just the past names peti mal & grand mal suggests there is a link??
Hi there, funnily enough, I’ve never really seen a seizure, but plenty of people have seen me have one!
I know they are unpleasant and potentially frightening to see, but it’s important to remember that they are very rarely dangerous.
As a person with epilepsy I’ve tried to
- keep my sense of self and not allow it to impact me as a person too much
- have the best treatment and seizure control I can
- be open about my epilepsy, not be embarrassed or ashamed and give colleagues and friends some basic information about what to do if I have a seizure.
- Adapt life where I have to (eg not driving) but not wrap myself in cotton wool
As it is, I’m hugely lucky, my epilepsy is well controlled and I live a full life, including lengthy periods working abroad.
I know everyone isn’t as lucky as me, but I do think it’s important for you and your daughter to keep in mind that you are very likely to get through this.
I do hope she gets the tests and meds she needs and you are both able to come to live with a difficult and frightening diagnosis.
Thank you all for responding to my post, this is the first time I have joined a group and I am defiantly finding your advise and support really helpful. I understand everyone has their own stories and experiences and taking the time to share these with me is very comforting, so thank you! Much appreciated x
Very similar scenario with my daughter. Absence seizures then moved onto tonic clonic-first one so traumatic too see. But dx with juvenile myoclonic epilepsy and once she was on meds the seizures stopped. We’re fully aware there will be breakthrough seizures but for now we make sure she understands the importance of taking meds regularly. The best advice we were given was not to wrap her in cotton wool and always let her know we’re here to talk. It’s been a tough 2 years but info from epilepsy.org has been invaluable.
Thank you for your advice, much appreciated
Hi Lorraine - it’s Mandy here (Tilly’s mum). I’ve sent you a message. Xxx
Hi Lightfamily, I hope you don’t mind me rea going out to you but when I saw your post I couldn’t not as it mirrors my daughters seizures s lot. She was diagnosed with absence seizures around 4 years ago now - she is on lamotrogine (?! ) and things have been going fine until 3 weeks ago when she had her first tonic clonic seizure as we were driving to her grandparents early one morning. She’s 13. I have never been so scared in all my life. I couldn’t get the image out of my head for weeks. The poor girl also had me checking in on her 24/7 and asking her if she felt ok. We were due to go to Spain a week later. We went and had two weeks holiday - on the last day she her second TC seizure -thankfully her dad was there to help me. I feel like I’m back to square one with the worrying! I’m a nervous wreck and can’t eat or sleep.
After the first seizure I saw her epilepsy doctor who said that she found it odd that she had had one…apparently after a long eeg notes discussion my daughter is sensitive to light. So, long story short, late nights and being on her phone didn’t help. I am having to battle with her now re the iPhone etc and try and make her understand that she can’t be on her phone 24/7 watching TikTok!
I suppose I wanted to let you know that I understand where you are coming from and offer any support where I can. I’m new on here. I hope you and your daughter are doing ok. Xx
Thank you for your response, yes it's hard when you see your child have a TC seizure & it did take me a while to process what happened. I totally understand how you feel, it's hard to hear her epilepsy doctor say 'it could happen again, just watch and wait'. I must say chatting on this forum has helped, listening to other mum who feel the same way is comforting but also hearing from people who have epilepsy, reading how they feel & being able to have an insight to how my daughter may be feeling is very reassuring. She has started to open up a little & has asked to speak to her epilepsy nurse so I'm hoping that's going to help her.I hope you are also finding this forum helpful & are able to find some reassurance & comfort from others experiences. Take care & best wishes to you and your family.
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