Seizure - could this be epilepsy?

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Looking for some advice please.

My child (9) had a seizure at the weekend. We went to hospital, they found an abnormality on her ECG and blood sugars were OK. They told me she was free to go home and didn’t seem bothered by the ECG abnormality.

I phoned my GP yesterday and explained what had happened. Another ECG is booked for later on this week and we have an appointment to see a doctor at the end of the month to discuss.

My child fell slowly to the ground, body went stiff for around 20-40 seconds with eyes very wide constantly rolling to the back of her head. I’ve been looking online (bad I know) and it looks and sounds like an epileptic tonic seizure.

I’ve been on edge since it happened but now I’m thinking what if it is epilepsy, should I be phoning to ask for an MRI/EEG as soon as possible? Should I wait?

I should add, my child had an episode mid last year at school. Only children actually witnessed it so we are unsure if that was possibly a seizure then, or a faint.

Does anyone have any advice/experience? I’d really appreciate it

They should be doing an EEG absolutely. Is it a consultant that you have been referred to?

Hi
So sorry that your child has experienced this.
My son was diagnosed as being epileptic in October after have 2 seizures that were 3 years apart.
The processes that we have gone through are
ECG in A&E after his second seizure - this was all clear.
EEG was requested to look at brain activity, this showed an irregularity in the right side of his brain. We had to wait approx 3 weeks after the EEG was conducted to have a consultation to discuss the results that confirmed he had the focal onset type of epilepsy . He was put on medication that day. As the EEG had shown an irregularity, an MRI scan was needed.
We have an appointment with a neurologist tomorrow to discuss the results of his MRI which has shown an abnormality in his brain.
He has only ever had the 2 seizures and leads a very normal and active life.

Make sure and ask lots of questions at any appointment that you are given re the type of epilepsy, medication, etc.

At first I was distraught and scared for him, but now realise that there are lots of people living very normal lives with epilepsy.

I hope everything goes well for you

@828Pax we haven’t been referred to anyone. The hospital discharged us and said if it happens again phone 999 and asked if I would like a follow up appointment in 3-4 months time. I was shocked. I phoned the GP yesterday to try and get the ball rolling with another ECG etc which has been arranged.

@letsgetamoveon thank you so much for your reply. A lot of what I’m reading online mentions how frequent seizures are so I thought I was maybe being abit silly suggesting epilepsy since my daughter only had 1 possible episode last year and 1 definite episode at the weekend. Reading about your son having 2 in 3 years means epilepsy could definitely be a possibility for us. Good luck at the appointment tomorrow. I completely understand about feeling distraught and scared, my daughter hasn’t even got a diagnosis but this seizure has completely turned our lives upside down. I’m a nervous wreck, barely sleeping as I’m constantly checking her and her afterschool activities would be dangerous if she was to have another seizure so we’ve put a stop to them for just now. We need answers as soon as possible 😢

Definitely push to get answers.

I know what you mean about checking her through the night, both of my son's seizures happened in the middle of the night and even though he is on medication now I still feel the need to check on him and he's 13!! The consultant has told us that all sports and activities are absolutely fine to continue as long as whoever is leading knows that he has epilepsy.

There are lots of epilepsy website to look at as well, epilepsy society and epilepsy action have lots of great information. Also the young epilepsy website for your daughter if she is diagnosed.

I found having these websites really useful to help me explain to my son what is happening as he's 13 and was getting himself upset as he was googling and we all know what google does!!

We also have a named epilepsy nurse who I can ask any questions that I have even the silliest of ones. It's all a learning curve for us but when you are armed with information and support it makes it that little bit easier.

Fingers crossed that all is well with your daughter and it's just a little blip

I would ask the GP for a referral to a paediatrician. My 2 children both have epilepsy, they absolutely should be looking into this further. I understand the worry that you are going through, I am sorry that you are going through this.

It’s 2 years (almost to the day) since DD1 had her first seizure. It was a tonic clonic seizure. She had 10 seizures between the first one, and medication controlling her seizures, this was over a 3 month period.

We saw a neurologist on the NHS 2.5 months after the first seizure, actually quicker than we managed to see one privately.

We had 3 seizures in 3 days and 2 hospital trips.

We also had a series of “fainting fits” prior to the seizures, and a number of clumsy incidents which may have been seizures.

@letsgetamoveon thanks again, really appreciate the info. I’m going to call the doctors tomorrow to ask if I can book the EEG. I know I have an appointment booked for the end of the month but the sooner I can get answers the better, I’m filled with so much fear! Will come back to you and let you know if and when we get a diagnosis. Thanks!

@AuditAngel your poor daughter that sounds awful. I hope she’s doing well since being diagnosed and medication is helping her.

I’m grateful for any information anyone has so thank you.

@828Pax , sorry I missed the last message you wrote. I called again this morning and have been told someone will call me back today. She’s at school and although the school are great I’m still thinking about her constantly. Thankfully I have my work to take my mind off things

ECG showed as normal yesterday so we have been urgently referred to paediatrics which I’m really happy about, then hopefully they will refer her to get an EEG.

Can you tell me what symptoms your children had while having a seizure please?

The doctor mentioned because my daughter didn’t have incontinence or bite her tongue then that’s a good sign that it’s not an actual seizure but just some sort of faint. I know everyone is different and has different symptoms and I don’t think he was trying to minimise the situation, I think he was maybe just trying to reassure me.

That's really good that her ECG was normal.

There are numerous different types of epilepsy that can range from general absences to full on seizures.

The type of seizures that my son has been diagnosed with are focal onset which are absences but his turn into full tonic clonic (jerking) seizures. He has not wet himself during his seizures and bit the inside of his gums on one occasion.

I think you'd be better waiting until the EEG has happened and let the specialists see what type she may be having.

Thank you @letsgetamoveon !

I know this is an old thread but I’d like to know.. does any have an epilepsy monitor? My son (13) had a unwitnessed seizure on Monday in his sleep… I’m sooo anxious I can’t bear it! I’m petrified of him having another in his sleep and me not hearing him.. 💔💔. Also, has anyone been able to get a private EEG after one episode? TIA

@Dontsayyouloveme I’m so sorry to hear that 😢. My daughter has been fine since but I totally understand your worry.

I tried calling everywhere for a private EEG and couldn’t find anyone to do it. Please let me know if you do manage to find someone as I’m still eager to get my daughter checked.

So your daughters not had a further event? That’s great news. 😍

sorry I should have made it clearer.. we have private health insurance for my son.. so was wondering if an EEg something a paediatric neurologist would request. I guess you’re looking for a one off EEG? I’d imagine that’s probably impossible to get sadly 😞

My daughter only wet herself once, during a seizure when she was asleep.

To my knowledge she has never bitten her tongue,

Most of her seizures were atonic seizures, like fainting, she could (once she realised) tell they were coming, but was unable to stop herself from falling.

She also had at least one myoclonic seizure, when the muscles go rigid, this was the one when she wet herself. She was devastated by this.

Our private neurologist arranged an MRI the day after our appointment with her, and an EEG a couple of days later. It was a 4 hour EEG where they tried to trigger a seizure with flashing lights at different frequencies, and also medicated her to sleep to check if tiredness/sleep would trigger a seizure,

Dontsayyouloveme my daughter had a seizure when we were sleeping in the same room and I didn’t wake up. I felt really guilty. After her first seizure, the hospital didn’t want her unsupervised at all, but that’s impossible. I also thought that was really bad for her mental health. I had complications when pregnant with my youngest and had to have an adult around me all the time, my mum and husband drove me nuts. No way was I doing that to my daughter,