Petit Mal

[bbcgillym]

I am looking to connect with another parent whose child has "petit mal" (absence seizures) to share their experiences with me and to give advice... does anyone know of anyone please?

bump

bump - am going to docs on Tuesday for a referal for DS (8) as school have requested testing for this as 3 professionals have mentioned it to them in the last 4 weeks

DS has complex partial seizures but there are some folk about. Has your wee one had a diagnosis?

hi bbcgillym. DS has epilepsy and has at some point experienced practically every known seizure type including absences.His last particularly bad spell involved hundreds of absences a day but thankfully we are over that now.

Any questions please fire away

Hello Loflo, not been many of us posting about the b epilepsy for a while!! Fingers crossed that it's because we're all having a reasonable time at the moment!

Hello fatzak how are you doing??? DS is all well but sadly my friends wee new one is in hospital at the moment as she started having seizures this week . Hows things with you?

bbcgillym: yes, please come talk to me.

Apparently i used to have these as a child. I only remember a few instances now. Last one was when i was 18 and with friends - thankfully. i grew out of them. No knowledge to impart, just the fact that i don't get them now.

Auntevil - were you given medication for your absences?

I honestly don't know when i was younger. After 11/12 years the incidents were so rare i know i wasn't taking anything then. It's like lots of things back in the 60s and early 70s, mum would take me to the dr and say 'x'. Dr would say 'nothing to worry about', no internet, not a wide circle of friends going through the same, you just accepted that answer. It wasn't until school got involved that they ever took anything seriously. Which is all the stranger seeing as my mum was a teacher!

How did you manage to cope with your absences? My daughter's absences gradually increased in frequency. She would "walk off" during the ones she had when she was not sitting down. In the end I had to hand-hold all the time when out. I'm not sure how she would have coped without medication. But then I always wonder would the absences have peaked and then declined naturally.
She is now struggling at school as she's about 1 yr behind and now has been given her first IEP to help catch up.
I admit I hate the medication but it seems to work. She has a bald patch on her head - side-effects of meds. Between the devil & the deep blue sea...

"walk off" is exactly how i would describe some of the incidents. The last incident when i was 18 i was with some friends and apparently my legs kept on walking and someone had hold of my dungarees (it was at the time of dexys midnight runners 'come on eileen - in my defence ) to stop me walking into a road. My friends said that they were talking to someone that wasn't there. I never knew that i wasn't there, a bit like your brain switching off but your body continues with what it's doing - auto pilot.
How often do you think she has these absences? Are they for long ?(apparently 1 of mine went on for most of a lesson once and all i had to show for it was the first letter as i went to write my name at the top of the page).

In stressy situations she was probably having an absence every 5-10mins. Stressy situations included going into & leaving school, gym, and hospital visits. Absenses were brief - maybe a few seconds up to a few minutes (enough tome to walk off the kerb into the road...). Inactivity could also see more absences - I've been told that when preoccupied you're less likey to have an absence. Getting hot (baths) would set them off.

During a walking one she would be on auto-pilot - if she bumped into someone she'd stop there until they moved. She knew afterwards that it was a "daydream" (as she calls it) because she would come-to in a different place. The non-walking absences she knew nothing about as there was nothing to define them. Spotting these ones are nigh impossible as she can continue doing what she's doing even though she is unconsious. I've seen this on an EEG.

I believe her absences started up to a year before they were recognised. It took her walking into rush-hour traffic for the alarm bells to ring. In the next 2 months (waiting for hospital assessment/EEG) they intensified rapidly. Like I said, medication has stopped them (the obvious ones) but as it's so hard to spot the others I can't say for sure.
The good thing is she's very likely to outgrow them like you did.

Mine were never that frequent - to my knowledge. I did have a few walking into roads situations, but the roads were quieter then, and traffic slower. That will be the hardest to monitor.
Does your daughter sleep a lot - little cat naps through the day, every time you go out in the car etc?

When she was having absences she definitely felt tired in a lot in the day, had headaches and tummyaches, ocassional dizzy spells, got cross a lot. She's always been a "sleeper", still needs minimum of 12hrs every night. Shopping etc tires her out, she always wants to get back home.

Yes it's the walking into roads that presents the most danger. When she begins a "walk" it's always with an abrupt change of direction, and she'll continuously change course unless she meets a barrier which will make her "stuck".

When the absences were frequent and before meds she suddenly accelerated in her learning(especially reading/creativity). It was if her brain was in over-drive. That was the plus side of what was happening.

i asked about the sleeping as i still need a lot (don't always get it though!), i also need to keep my brain active - i do tons of crosswords and sudokus. i find it relaxes me before i go to sleep. I have always wondered if my energy goes to my brain rather than my body, which is why physically i burn out much quicker than my brain wants to stop. My friends son has ADHD and she has to burn off some of his extra energy after school. I wonder if mentally burning off excess energy might help?
Re headaches and tummy aches, does she get irritable bowel symptoms - maybe food intolerances? IBS can flare up with stress, causing those symptoms, frequent peeing etc. Stress could be from the absences?

IBS - could be. She gets constipated often, lots of wind. The headaches stopped when she started medication, so they were part of her epilepsy.
I've noticed that she has trouble concentrating these days. This is one of the side-effects of the meds though ofcourse it's difficult to pinpoint what is the reason: epilepsy/meds/natural. She could easily count to 20 in three languages a year ago. Now she gets in a fuddle after reaching 10 in any . In that respect her "mental energy" has faded and I'm inclined to blame the medication - it effectively "dampens" the brain. It's a hard price to pay to be seizure free, but she couldn't have continued as she was. She's happier, that's the main thing.

Have you ever seen an absence seizure on an EEG? Pretty amazing to watch on screen. Normally lots of parallel lines all leaping about randomly as they do their own thing (neurons firing away) then suddenly the whole lot synchronise and get locked in a repetitive identical cycle (seizure). I'm probably explaining it not too well. To me it looked like excess activity causing electrical overload/crashing. Maybe the reason children tend to outgrow it is that the brain stops super-firing those neurons as we age. A weak theory maybe but hey even science still doesn't know why absence epilepsy starts or why it stops.
Do you wonder of your mental energy is part of what caused your absences?

My mum was apparently told by someone - god knows who, to keep my mind occupied. I think it was something to do with school. Apparently when i was young my brain was quicker than my body to communicate things - stumble over words trying to get them all out, missing out words as i was writing as my brain was on to the next thing. But in all honesty, i always loved puzzles and doing several things at once.
Maybe, the body gets better at keeping up with the brain and the brain is slower and easier to keep up with? one day they'll work it out. It's as you say, just keeping her safe until things work themselves out. I think it was probably easier for my mum as you didn't have the info that we have now, so if she was told everything would be fine she just accepted it. Now we have the internet we can scare ourselves silly, or make good use of the information.

DS1 has them. he was diagnosed in July and started on epilim and they've stopped. It was only me and his dad that noticed them, everyone else thought I was barmy!! When he stopped halfway across a pedestrian crossing we got seriously freaked out

My dd is taking Zarontin - that's the one med that is just for absences only. I was given a choice of meds and decided upon this one. How is your ds doing at school?

The standard rule of thumb is that children can start weaning off meds when they have been siezure free for 2 years. I have syringes marked at 0.2 increments so I can wean up/down very gradually. My daughter takes 4ml twice per day, less than recommended for her bodyweight but I'm keeping it at this (until she has a growth spurt) as this dosage works at present. Opinions differ - 1 hospital said I MUST give 5mls as according to research this is the best starting dose, the other hospital(moved area) agreed with minimum intervention. Every child should be treated as an individual(IMO).
As for the 2yr rule - I'll follow my own observations.

Thanks for your input Auntevil - it's really interesting to chat to someone who has experienced absences.

DS doing well at school. Have to say he is more with it since they stopped. We were noticing a few per day but on his EEG he had loads of little blips that must have been affecting him