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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:
Fretfulagain · 22/02/2023 20:11

I'm no expert moomincorn but I thought you weren't conscious during an absence but I guess everyone is different. I wonder if what you describe is more like a focal seizure but no idea, really, your absences aren't like the ones I've seen so I can't really comment. I would respectfully suggest you get them checked as they must be a pain and wouldn't you prefer to know what they are? Especially if your daughter is getting them too.
also, if you drive . . . sorry to bang on about the driving safety thing but, well, seems not the best idea to drive with absences?

Original poster
Smartiepants79 · 22/02/2023 20:11

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?

Does it happen when you’re driving?
I would definitely go and get it checked.

OP posts:
Papergirl1968 · 22/02/2023 20:11

I'm 54 and I'm hospital, having had a brain tumour removed yesterday, which started with a couple of absence seizures nearly two years ago, but it had probably been there a lot longer. I've had proper fall down unconscious seizures too. A lot of my absence seizures were while I was in the phone and would stop talking mid conversation. The first time it happened I apologised for falling asleep. I knew I hadn't but didn't know how to explain it.
it's unlikely to be this and I don't know much about symptoms in kids but do push for an MRI. And don't panic. I'm recovering well just over 24 hours later x

SybilWrites · 22/02/2023 20:14

My dd did - it was thought that they were part of her febrile convulsions, which got progressively worse as she got older until they stopped when she was 6 or 7. Because she was so old and she had quite a few she did get investigated for epilepsy.

Papergirl1968 · 22/02/2023 20:15

My memory has suffered a bit but may be the meds rather than the seizures. I've lost some sense of smell too.
Can't drive at the moment. I think I can reapply for my licence after being seizure free for 12 months.

Fretfulagain · 22/02/2023 20:19

Yes, the meds can be rough. Hope you get better soon papergirl.

TwittleBee · 22/02/2023 20:19

Smartiepants79 · 22/02/2023 19:28

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?

Show quote history

The Tonic Clonics effect him a lot more than the absents. Those drain him for a good few hours after. Whereas, with the Absents, it's like he suddenly snaps out of it, has a moment of confusion if he notices he has missed something, and then appears to be okay. We are lucky that he responded really well to the medication and had a fantastic neurology team, diagnosis happened very quickly as we had the EGG and the videos. He only has seizures now if he misses a dose

TheOtherHotstepper · 22/02/2023 20:19

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?

DH and I both think DGS had an absence seizure. He was 2 years 7 months at the time. No way of knowing whether it was an isolated event. DSIL saw it and ignored it. DSD was told about it by us 4 days later when we discovered she didn't know, but this family has a phenomenal capacity for denial, so if she didn't see it, it didn't happen.

There is a background of issues that need exploring: poor motor skills, a speech delay, poor social skills etc, issues flagged in his developmental review, but neither parent is yet prepared to pursue any of this. I suspect this is just another piece of a much larger puzzle.

Moonicorn · 22/02/2023 20:20

Dont worry I can’t drive!

Iris1976 · 22/02/2023 20:21

I only knew I had it when I unknowingly walked into the road,luckily wasn't hurt,had EEG etc and Dr explained all the times my mum thought I was "in my own world" or "off with the fairies" and every school that said I daydreamed too much were probably petit mal episodes,last recollected one was age 19,none since that anybody noticed.

Hereforthedramaz · 22/02/2023 20:21

I had them as a child, might not be the same thing but mine were Petit Mal.

A form of epilepsy but it was stressed to us that I was no more likely to develops grand Mal seizures than anyone else, it doesnt become "full" epilepsy and most people grow out of it at puberty.

I would zone out and continue what ever I was doing before, so walking etc or just sit down etc so not immediately obvious. At first school thought I was deaf as wouldn't respond.

Luckily I had a blank (as we call them) during an eeg so they knew what it was and I went on some foul medicine for a few years. Sorted them out almost instantly and as predicted I grew it of them at puberty.

No memory or behaviour issues afterwards.

Fretfulagain · 22/02/2023 20:26

Moonicorn · 22/02/2023 20:20

Dont worry I can’t drive!

Phew. 😀

Fretfulagain · 22/02/2023 20:28

TheOtherHotstepper · 22/02/2023 20:19

DH and I both think DGS had an absence seizure. He was 2 years 7 months at the time. No way of knowing whether it was an isolated event. DSIL saw it and ignored it. DSD was told about it by us 4 days later when we discovered she didn't know, but this family has a phenomenal capacity for denial, so if she didn't see it, it didn't happen.

There is a background of issues that need exploring: poor motor skills, a speech delay, poor social skills etc, issues flagged in his developmental review, but neither parent is yet prepared to pursue any of this. I suspect this is just another piece of a much larger puzzle.

Show quote history

again, not a doctor but autism spectrum disorders and epilepsy very often go together, apparently. I learned about this recently. Not much you can do other than advise the parents get him checked out. good luck. I hope your DGS is ok.

Papergirl1968 · 22/02/2023 20:30

Getting great care at the Queen Elizabeth Hospital in Birmingham, thanks Fretful.

moimichme · 22/02/2023 20:38

I think my ds had a couple of very short (less than 5 seconds) absence seizures when he was quite small (2-3 years old) and since then he has had two more serious, obvious ones which took us to hospital afterwards. The big ones (not sure what they're called now) only happened when he was super tired, so we try to avoid that!! He hasn't had one in over a year now, thankfully, and they didn't seem very concerned at the hospital.

My niece (my sister's daughter) also had a few when she was little, but has outgrown them. My sister says one doctor told her that some children respond with a seizure rather than fainting because their brains aren't wired in the same way as adults. So there's a reasonable chance of outgrowing them.

ifellintoarabbithole · 22/02/2023 20:43

I'm another who had Petit Mal. I would be triggered by flashing lights, and certain florescent lights in shops. Apparently I would just stop what I was doing and stare. I don't think I was aware of them happening at the time, as family members would tell me. Apparently I had probably had them for many years before diagnosis, but people thought I was just a daydreamer. I was diagnosed at 12ish from an EEG, and took Epilim for 3 years. Like PP I also grew out of it.

Hope you get some answers for your DD, OP.

Palm7rees · 22/02/2023 20:54

@Hereforthedramaz I’ve never met anyone else who had it as a child.
Your memory of the medication really reminded me of how revolting it was. Thick blackcurrant or orange flavour. I once remember shaking the bottle and the lid wasn’t on properly and it went all over the carpet. I progressed to massive pills.

Hereforthedramaz · 22/02/2023 20:57

@Palm7rees I tried to move onto the capsules but they were so big and so plasticky!

I had a problem with capsules as a result for years!

The medicine was so sugary, I can still smell it and see the sugar building up around the lid!

Palm7rees · 22/02/2023 21:01

@Hereforthedramaz this has really brought back memories. i remember the crusty sugary lid. Yes the pills were enormous!! I can still taste the plastic. Was so glad to stop taking them. Can’t remember the age I was ?

Palm7rees · 22/02/2023 21:02

The up sides were, when we went to hospital for check ups, my mum would buy me a new Polly Pocket!

Hereforthedramaz · 22/02/2023 21:08

@Palm7rees I think I must have been 10-11 when Mum officially let me stop taking the medicine, like you I was so happy!

I used to have ribena immediately after and never has that again either! I get taste flash backs!

I'm still never 100% sure about answering forms that say have you ever suffered from epilepsy! And might well be unrelated but I really don't like bright light, although I don't think my blanks were ever triggered by flashing lights.

OrderOfTheKookaburra · 22/02/2023 21:12

My DS's teacher insisted I have him tested for absence seizures but he did not have them. In his case it was his brain struggling to keep up with the information overload due to partial deafness in his formative years. Listening to and understanding verbal instructions, information and input was so hard for him that he would occasionally just switch off.

As he grew up his brain learned what is normally learned from 6 months to 3 years re sound recognition/comprehension.

He is now a very bright and happy boy in junior high school.

Original poster
Smartiepants79 · 22/02/2023 21:23

Thanks for all your stories.
I hope we get some answers soon.

OP posts:
Tiredmum100 · 22/02/2023 21:25

My sister had theses for years, as well as frequent grand mal seizures. It was very badly controlled until she ended up in hospital very unwell. Luckily off the back of that hospital admission, they sent her to London for tests and investigations as were considering surgery, but they managed to change her meds and touch wood she's had no fits in the last 13 years and has recently started driving again. She doesn't remember a lot of those years. I mention things we did and she occasionally has no memories of them. I would put this down the grand seizures. The petite mals- she would just stare or stop talking, they'd last 5-10 seconds I guess. Sorry you're going through this OP. It's horrible.

feellikeanalien · 22/02/2023 21:35

Smartiepants79 · 22/02/2023 21:23

Thanks for all your stories.
I hope we get some answers soon.

OP how old is your DD? My DD has epilepsy which is fairly well controlled by medication. Her epilepsy was triggered by puberty. She does have an underlying neurological condition which is why this happened.

She still has occasional absence seizures where she looks away, goes quiet and doesn't want to talk or be touched. These can be a minute or less although it seems longer when she is having them. She often feels a little sick or sweaty and these seem to happen more when her period is due. Is it worth asking if it could be something hormone related?