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Original poster

Absence seizures- any experience?

73 replies

Smartiepants79 · 22/02/2023 19:15

For anyones child suffer from absence seizures?
Can you tell me how they present themselves?
Do they affect your child’s memory?
Have they developed into more obvious seizures?
My Dd had a seizure last week and we are now questioning if she has absence seizures and we’re only just noticing.
I’m very stressed. Any idea experience would be welcomed?

OP posts:
Nimbostratus100 · 22/02/2023 19:17

My experience of them with a friends teenager was just simple moments of silence in the conversation, and I didnt notice them at all until pointed out to me. He just looked like he was thinking for a moment

but that doesnt help your really, everyone is different

WeCome1 · 22/02/2023 19:18

My daughter had a tonne of absence seizures, 100-200 a day, which were successfully medicated.

We never had the possibility of other seizures mentioned, I don’t think there is much crossover, is there?

She would just go blank for a few seconds. She noticed herself though, that she’d missed something. That’s unusual though. It’s more commonly a parent or teacher who notices.

Fretfulagain · 22/02/2023 19:21

don't panic - but do get them checked out. they'll likely do an eeg. DD had them and they responded to medication very successfully. it is also possible to grow out of them, sometimes. good luck.

Fretfulagain · 22/02/2023 19:22

what sort of seizure did your dd have last week? if you can capture an absence (or any seizure) on video your specialist will be very grateful and can tell an awful lot from the footage.

TwittleBee · 22/02/2023 19:22

We didn't realise the absent seizures were absent seizures until our DS had a tonic clonic and he spent time in hospital. I managed to capture a couple on film by pure chance which helped the diagnosis of the absent seizures along with the trace. They are successfully medicated.

Fretfulagain · 22/02/2023 19:25

absences vary a bit but usually look like 'staring moments'. if you ball up a tissue and throw it towards them, they won't flinch. Can last a few seconds to quite a few seconds - very hard to say but you will learn to spot them if they are happening. DD would not drop what she was holding but grip would slacken and if she was walking, she'd keep walking (one reason to medicate).

Original poster
Smartiepants79 · 22/02/2023 19:28

TwittleBee · 22/02/2023 19:22

We didn't realise the absent seizures were absent seizures until our DS had a tonic clonic and he spent time in hospital. I managed to capture a couple on film by pure chance which helped the diagnosis of the absent seizures along with the trace. They are successfully medicated.

See, this is where we’re at. She had a tonic -clonic last week out of the blue but we’re now questioning if she had been having absence seizures and we’ve just not recognised it.
Can I ask how they affected him afterwards? How was his behaviour? Did it affect his memory?

OP posts:
Fretfulagain · 22/02/2023 19:32

i am sorry you are stressed. it is hugely worrying, i know. Epilepsy action has a helpline and lots of info as does the epilepsy society. i would encourage you to look at their resources and resist the urge to google wildly. try the helpline if you are stressing out.
https://epilepsysociety.org.uk/
https://www.epilepsy.org.uk/

Original poster
Smartiepants79 · 22/02/2023 19:33

I’m currently more stressed that it Isn’t epilepsy but something worse!! 🤦🏼‍♀️

OP posts:
Fretfulagain · 22/02/2023 19:35

a tonic clonic will impact memory much more than absences, which were more 'light touch' in our experience. Neither necessarily has long-term impact. DD passed her GCSEs (on medication) if that helps (well, one did, one takes them this year).

Fretfulagain · 22/02/2023 19:37

ah ok, I can see why you are stressed then. What else do you think it might be?

Did they do an EEG while your child was in hospital after the tonic clonic? They'll need that to see what is going on in the brain (not that it is a full picture). Ours also had MRIs. EEG measures waves produced by brain and MRI gives an image of the structure of the brain (to my crude understanding, not a doctor!)

TheOtherHotstepper · 22/02/2023 19:41

DGS made a noise as if he was going to be sick and then his head dropped forward. SIL took him out of the swing, but he couldn't stand up, just crumpled. We took him home and after a three hour nap, he appeared to be fine. Unfortunately, SIL attached no importance to this, didn't even tell his DSD so nothing has happened about it, which I think is very wrong. We only spotted it because we were actually looking at him. If he'd been in his forward facing buggy, or his rear facing car seat, we wouldn't have seen it.

Original poster
Smartiepants79 · 22/02/2023 19:42

They only did blood tests and an ecg in a&e.
waiting for an appointment with a specialist.
I don’t know what I think really. My head is running wild. I’d just like to know for sure that theres nothing sinister lurking.

OP posts:
Fretfulagain · 22/02/2023 19:44

hello hotstepper - are you indicating you think your dgs had a seizure? how old is the child? was this an isolated event? was the child conscious?

Elderflower14 · 22/02/2023 19:47

Ds2 had unexplained jerking fits as a baby and had a lumbar puncture and MRI when he was two weeks old. They then stopped. Fast forward till he was nine and he started having absent seizures. I kept telling his paediatrician about them but they didn't happen very often. He then very fortuitously had one in front of the paediatrician at an appointment!
He was tried on sodium valporate but it made his behaviour much worse so it was stopped. He had another MRI. He grew out of them eventually...
I found that they lasted about 10 to 20 seconds. I got used to them... They frightened other people though. He had seizure in front of our gardener... He kept saying "is he okay... is that boy okay?"
Hope you get some answers soon..

Palm7rees · 22/02/2023 19:47

@Smartiepants79 Hi

I was diagnosed with Petit Mal as a child. I can’t tell you exact age, I would say around 7-9 ish.

my mum said I’d just go completely blank. Nothing in the eyes and stand still. I once did it crossing the road.

last for a few seconds.

i had lots of EEGs and tests. Ended up with some horrible medicine I took for a few years. Then I grew out of it. Never had anything ever since. I can’t even remember having the absences.

Palm7rees · 22/02/2023 19:49

Just read back your 1st post.

I have never had any issues with memory. I did fine in my GCSE’s (A’s-C’s) have a decent job. Never had anything issues with it apart from the absences that ended up stopping.

Moonicorn · 22/02/2023 19:49

I have absence seizures as does my 3yo daughter. I didn’t even know that was what they were until a couple of years ago when I said ‘oh look DD is doing that thing I do when I go blank and stare into space for a minute’ and someone said it was an absence seizure. My mum has them too so just assuming they’re genetic for us - I haven’t taken her to see anyone, should I be?!?!

Fretfulagain · 22/02/2023 19:54

I'd say anyone with absence seizures should get them checked out, yes. apart from anything else I believe they generally respond well to medication (ethosuximide is most common) so you don't have to live with them. they must be a bit of a nuisance (watching a film, crossing the road, er, driving, I assume you aren't driving with absences?!)

Palm7rees · 22/02/2023 20:03

@Moonicorn I did have them crossing a road a a child. Not particularly safe!!

Moonicorn · 22/02/2023 20:05

I mean are they absence seizures Confused it feels like my eyes are ‘stuck’ on whatever I’m looking at and everything blurs - I know it’s happening and it lasts about 10-20 seconds. Then I sort of blink a few times and it’s back to normal. My mind goes blank-ish but I don’t lose grip on reality completely if that makes sense?

Moonicorn · 22/02/2023 20:05

It happens more when I’m tired but maybe a few times a week.

Fretfulagain · 22/02/2023 20:06

let's just say we medicated. apart from safety it can't be easy trying to follow lessons if you have 10 second blanks every few minutes or even several times an hour.

Notthecarwashagain · 22/02/2023 20:09

My DS was having absence seizures. He has Tourettes so it was a while before I realised they weren’t just tics, he was then referred for an eeg.
He also had a blood test done, which came back that he had hypothyroidism and really, really high tsh levels were the cause of them.

He is on levothyroxine now, and no longer has seizures.

All the best. It’s a worry Flowers

Palm7rees · 22/02/2023 20:11

@Moonicorn woth my petit mal absence seizures I never knew I had them. Certainly couldn’t remember them. Perhaps they are sort of day dreamy things?

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