Hand hold pls- 10 year old Dd had a sscond seizure today. Pls talk to me about epilepsy

[MicDoyle]

My dd had her first seizure 4 weeks ago. The ambulance came in minutes. She was taken to the hospital. Because it was her first one, it was not considered serious. She didnt have a fever, was not poorly. Bloods everything was ok.

Today, she had her second seizure. It was almost identical to the first, tongue biting, fitting. Out of consciousness. She is currently having more tests and they are giving her medication for epilepsy: levetiracetam

Has anyone else experienced this with their child...apart from letting school and clubs know, what else do I need to do. I feel so worried.

Have they done a head ct/mri yet ? If not insist on one

Unfortunately I have experience of this since my teenage son’s first seizure in October 2024. It was never on our radar at all. Completely out of the blue and it’s turned our lives upside down.. 💔

If it is epilepsy, one thing I would say that is really great advice I got from an internet page is… make a note of every seizure afterwards. Time, date, length of seizure, what the seizure looked like. Also make a note of when the medication started, name if medication, dose, any increases etc. Buy a 2026 diary and keep all the information in there, along with appointments, tests, results.

I hope you get some answers soon, as I know how incredibly traumatising it is to see your child have a seizure and the anxiety around diagnosis.. 🥺

Also, if you are able to video a seizure, it’s really helpful to the consultants in terms of diagnosis, alongside the usual CT, EEG, MRI’s etc

@lifeisgoodrightnow they have scheduled one for her. I hope it doesnt take too long on the NHS.

@Inwhitelights Thank you so much for that tip. I will write everything down.

Thank you both for your replies. I really appreciate it.

My DH started at the same age, he has epilepsy, scary at first, insist on scans to see if they can pinpoint an issue that could be treated. If epilepsy is then please know that Medication is great these days, he takes a tablet twice a day and seizure free, the medication he had years ago came with side effects, the one he is on now doesn’t. Modern medicine also allows for pregnancy.

Tiredness massively effects the brain, when sleep deprived he gets ill. So pay attention to diet and sleep. Best wishes to you https://www.epilepsy.org.uk/?gad_source=1&gad_campaignid=18393577891&gbraid=0AAAAAo8efzNBD1xTAt4X2FolEHUdxPGUX&gclid=Cj0KCQjwkMjOBhC5ARIsADIdb3foW9WOcyB5uQhBXphJJAuhPbRH9VU7Z0DBLTbtoasJNsYvr7YAIVsaAr5lEALw_wcB

I work in a school where several children have high levels of need around their epilepsy (ie need to be monitored accurately to determine hospital visits or not) and we have stop watches which are kept within reach of them so that any adult can time the seizure. It’s really useful, especially if you aren’t used to watching a seizure when time is so hard to judge. Definitely video if you can. Sorry, this sounds like a very worrying time.

I have a positive story. I was diagnosed with epilepsy at 18. I’m now in my 50s. I’m medicated, it’s very well controlled and I’ve been seizure free for many years.
I hope you get a quick diagnosis and the right medication.

Also agree about keeping a journal, note activity, sleep and food in the time leading up to a seizure.

DP had his 1st seizure at 6 years old. He is in his mid fifties now. He had his last seizure in 2020. He lives a full and active life which includes driving as his epilepsy is well controlled. Agree with a journal as you might be surprised as to what the trigger is. DP is fine with flashing lights but extreme emotions can set him off, so to others he comes across as a bit "meh" when it comes to things others may feel excited/upset about (such as the loss of a loved one, going to an event such as the Oasis gigs recently or the trip of a lifetime), but his has conditioned himself to stay neutral so as not to trigger an episode.

@Liondoesntsleepatnight thank you so much for sharing your experience.
DD will be starting secondary school in September and school starts promptly at 8am. I will have to make sure she gets enough sleep.

@NorthantsNewbie that must be incredibly difficult to deal with.

@Malasana That is really good to hear and Im so glad to hear your treatment has worked so well.

@aspidernamedfluffy Thank you for sharing. Yes I will definitely keep a diary. I do think tiredness is one factor.

Thank you to you all for your replies. My head is buzzing a bit. DD is back home and playing with her siblings.
My mind keeps racing. DD will be starting secondary school in September. Im worried that stress might trigger a seizure. Can she have extra time for exams. She will have a NGRT and a CATS test in Year 7. Her medicine might make her a bit drowsy. So can I apply for extra time to the Senco...

You can definitely apply for extra time in exams. I have just it for my son who is in year 10 and has gcse mocks in a few months. They will want evidence of diagnosis and the medication your daughter is taking. My son wears a wrist seizure monitor so he also has to have his mobile phone within distance so it’s connected to his monitor. He only has seizures as he’s falling asleep but still… . X x

Read up on SUDEP. I’m not scaremongering, it’s rare, but does happen. It was never mentioned to us when a family member was diagnosed with epilepsy. Doctors don’t like to mention it and talk about how great modern meds are, and how people are seizure free for years, but epilepsy is a serious neurological condition and needs to be treated as such. We learnt about SUDEP the hard way, unfortunately.

I have photosensitive epilepsy (triggers are flickering light such as sunlight, strobe lights, unsteady footage on screens, certain types of lighting in shops & other venues), I’ve had it since I was 7 & am now 49.
I started Epilim at 20 after I had a seizure at a gig, I’d stayed off meds until then as my family disagreed with them (they knew nothing about SUDEP).

The Epilim did control my epilepsy so I was able to go to clubs and raves which was great! but I came off it by the age of 35. Due to the awful side effects. & Initially because I wanted a baby and having children is really not recommended on Epilim. But then sadly realised I could not have a baby anyway. Also I had awful hair loss, weight gain, indigestion, and had actually developed Osteopaenia as a result of being on Epilim for so long. Another bad side effect was the morning drowsiness- I was regularly late for work, & slow at everything in the mornings.

So I went onto levetiracetam instead but it proved ineffective as I had some bad seizures on it.
I then added in Zonisamide which helped a little but still found shop lights a major issue; so the levetiracetam was swapped with Briviact.
Things then weren’t too bad until my psychiatrist changed my anti psychotic medication (I take that for Schizoaffective disorder) which has unfortunately affected my seizure threshold - now I have partial seizures every time I walk or travel in sunshine & feel quite unwell just walking round Tesco as they changed the lighting in there.
I can’t drive, can’t attend the dance music events I would enjoy, can’t cycle, can’t even watch tv alone.
It’s a real nuisance tbh. But I know I’m lucky in that at least I know my triggers.
I have a neurologist appointment in July to try to sort things out.

I will also warn you OP, hormones can be an issue with Epilepsy as in periods can make seizures more likely.
Im now peri and on HRT as well as the Pill but again, my new anti psychotic messed with the HRT too so I’ve had to change the dose of that too.

Im really sorry I can’t say anything more positive about epilepsy at present.

@Inwhitelights thank you so much for sharing your son's experience. Wishing him all the best for his GCSE's.

@PauliesWalnuts I'm so sorry sorry to read your post...that is awful. Im so sorry.

Thank you so much for sharing your experience. My DD hasn't started her periods but I believe she is on the cusp. Im so sorry to hear the problems that you have had with the meds. I hope your appointment in July goes well.

My DD had 2 seizures when she was 10. They happened while going to sleep and after tests she was diagnosed with Benign Rolandic epilsepy. The first time was so traumatic and we didnt know what was happening. Luckily she share a room with her sister who saw it happening.

Wishing you well

Have you been given an indication of what type of seizures your DD is having? My DD started age 8 had 4 in short time frame, medicated two year and then managed 11 months off before having a tonic clonic and had to go back on the meds. She has SELECTS which we are fingers crossing she grows out of like her dad did. For the first month I slept on her floor on a mattress and then we got a baby monitor. She doesn’t remember her seizures, its more traumatic for me - the anxiety is horrible - do not underestimate it. I still get very anxious over her sleeping patterns. However, she still does everything she wants to do - climbing, sailing, guides etc etc - will have to make the decision soon over when to trial her off the meds again.

Good luck, hopefully nhs will work fast to get you answers.

Thanks @MicDoyle

No advice sorry OP, but I wanted to send you a hug xx

Sending empathy & hugs. DS (aged 20) had his first tonic-clonic seizures out of the blue at 18. Docs hoped it was a one off but had his second episode of multiple seizures in December 2024. He’s been medicated since but has had several breakthrough seizures, often months apart, but can never completely relax because of the unpredictability. EEG & MRIs fine, so we have no clue on the cause. DS was given extra time in exams, because the meds (levetiracetam & now Lacosamide too) cause tiredness. He took his A levels in a room on his own with an invigilator, in case he seized & disrupted other students. Went to uni last September but has taken a formal interruption of studies from January as he had experienced an increase in seizures & was anxious about living on his own. Now on an additional medication which we hope will enable him to feel confident about returning to his studies in September. He’s still sad about having to stop contact sports, driving, having a bath, but is slowly coming to terms with his condition. The impact of this on our family has been huge. Tiredness, stress, high heart rate, skipping meals, can all be triggers for DS. I hope you can find a medication that works.

@Anoninsomniac Yes she had tonic clonic seizures. Her dose has now been upped from 3ml to 4.5 ml.

Thank you to everyone for your kind messages. The NHS has been fantastic and my DD has been so resilient and stoic. Im proud of her.