facial cues and seizures - this sound familiar anyone?

[herjazz]

we're still at the inconclusive, waiting for likely epislepsy diagnosis

think dd had seizure last night - she shook for about 10 mins. Unresponsive but colour / breathing ok

noticed prior to this in day that when she was smiling, she only seemed to be using one side of her face - eg noticibly wonky mouth and only one eye smiling - if that makes any sense.

Know I've read stuff on here before about facial cues / twitching pre empting seizure. Does this sound likely here?

(dd ok now - stayed in hospital overnight cos she also come out in non blanching rash but home now - bloods ok. Prob viral infection)

[PheasantPlucker]

My dd goes very red and blotchy in the face just prior to a seizure, then her eyes move to the left and stay there, as if she is looking at something in the extreme left field of vision (which she isn't, as she has a visual field deficit there). Her breathing becomes very odd and irregular too.

Hope your dd's infection goes soon. My dd is on sodium valproate but has 'breakthrough' seizures if she is ill/tired/overwrought/overexcited.

[feelingbetter]

At the moment DSs seizures sound very like Pheasantpluckers DDs eyes usually turned to the extreme right - and, like Rivens DD - a slightly lazy smiling one half of face after seizure.

For the bigger ones, we notice his mouth twitches slightly, almost like he is sucking in his bottom lip very quickly and turning down his mouth like a sad face. They are so quick though and can happen over a few days before a big seizure. Hate seeing them coz we know whats coming, but thankfully dont see it that often, illness usually.

Hope DD is OK and you get answers soon. Video EVERYTHING!

Terrible lack of apostrophes and stuff sorry have the lazy boy dozing on one arm

[herjazz]

cheers ladies for replies

ooh you got me thinking now - maybe the restless night the night before could have been something. V noisy breathing, quite 'gaggy', windy - appeared v uncomfortable

she's just done it again tonight as I was typing this. Dashed upstairs with video camera (as opposed to my rubbish mobile where you can't actually make anything out). Tonight she was squirming about a bit, moaning, throaty breathing and grinding her teeth (not heard her do this much before). She got onto her front into like a muslim prayer position - arms in front of her, bottom up in the air. Then she got into sitting position and was still moaning. Not responding to her name, as though still asleep. Bit dropping over to the one side. I then stopped filming, picked her up and she shook a bit in my arms then settled back into sleep

was doing lots of similar stuff on previous nights this week but I just put it down to being in discomfort. Had nurses on also and they treated as this.

feelingbetter - have seen her do this with her mouth loads too. Always put down to acid reflux

If I can find the lead could I send you the video on fb? Bit wobbly hand about putting it here. PheasantPlucker - are you on fb or TTR?

Going to try get appt with her comm paed this week - he has special interest in epilepsy

Thanks again for yr help

[PheasantPlucker]

Yes I am on FB. Am trying to think of a clever way of letting you know how to find me...

[fatzak]

Hope you can manage to get some video - we spent many an hour trying not to panic/calm down DS whilst grabbling around for a phone which as you say will no doubt run out of memory/battery as you start filming!

Hope you can get an appt with the paed - it's so crappy this early part just not knowing isn't it? Actually, three years down the line we still don't know what is causing DS' seizures

[r3dh3d]

DD1 has the sad/dubious face too. And the looking to one side. Sometimes she'll wander round in circles chasing whatever-it-is.

I think it's all of a piece with what they used to call an "aura" ie a simple partial before the main event, which often manifests as a sensation (seeing things, strange taste, nausea, fear, whatever)

[heartofglass]

ta for replies - not been on here over weekend

sorry to hear you are still unsure of what is going on also fatzak. This has been going on for a while with us too - she had seizure as a neonate and a few over the years - she has a metabolic problem causing her blood sugars to drop so it was largly put down to that. But over the past year the metabolic stuff has been under control due to having gastro and emergency regimen sorted so its looking like its something separate. Have had 2 consultants say epilepsy highly likely on basis of her brain scan. EEGs been ok or inconclusive or just a bit suss so no treatment yet

that's interesting to know about auras r3dh3d

pheasantplucker - I'm fb friends with 2shoes, feelingbetter, riven and glittery

recently namechanged here - been here a bit. You can email me [email protected] and I'll tell you how you can find me on fb - not from that email obv! If anyone else wants to add me that's grand

[heartofglass]

oh its a different name again - will change back to herjazz and stick with that!

[PheasantPlucker]

OK, I am FB friends with Riven. There is currently a cauliflower connection.

[fatzak]

Oh now I want to be everyone's friends on Facebook! I'm friends with Riven too - pic of DS in front of yellow campervan!

[herjazz]

hi bethron - so yr ds does what you describe when he is having seizure?

right have stalked riven's fb friends - found you fatzak but I'm stumped by the cauliflower reference! I've got a grinning moonhead in my pic and a status update if that helps

[r3dh3d]

How you doin' Bethron?

[Psychotrace2]

sorry you still not got any answers!

we still same here to dd did some thing different over weeekend a little shake and a funny face expression did it 3 times over 5 min and was notawhere she was doing it and didnt answer to her name over and over ,the respite carer saw it to and agreed it was not normal.

[PheasantPlucker]

Oh, the cauli went, it's more East Anglian now.................

[PheasantPlucker]

ie 2 girls + a status

[herjazz]

er that's what I used to do when I was little, on holiday to every other girl in the pool that looked within 5 yrs of my age. Friendly soul that I am!

Nah really - would love to be in touch with more folk of here. Yr all GRATE! Email me on the address above. Or stalk on facebook - think paula radcliffe when perusing riven's friends. That's a clue - I'm not really paula radcliffe

Can't get on FB for now cos its blocked at work but will go hunting later

Hello trace - yes I remember yr descriptions before of yr dd's 'banana' episodes. Are you really no further down the road re diagnosis and meds?

We have appt next tues. Hopefully can get a few opinions on the vid first

[PheasantPlucker]

OK, find me later

[herjazz]

oh I can't - think I know which one but if not I could be like stalking riven's best mate! Can't you change yr profile pic to one that say PHEASANTPLUCKER OFF MUMSNET on it

think yr status must be hidden from nonfriends. Can only see status for few people

[feelingbetter]

Oooo! Can I join in? Can I, can I, can I, pleeeaaaassssee!

Aksherly what I'll do is let the jazzy one suss out who you all are, then nick you off her when the hard work is done

I'm her friend who is all sepia looking standing on an empty beach with my boy - if anyone wants to add me .

r3 how are things with your DD? On the up, I hope.

herjazz back to the original OP - funny you should say about acid reflux, it does seem to get worse before a seizure, I often wonder whether his insides know something we don't - like general rumblings before a big earthquake, not visible on the surface IYKWIM.
Def not a blood sugar event, is it?

[herjazz]

no not sugars - her bm was around 7. She'd been on emergency regimen which is like glucose / dextrose drip for few days prior. Not had a hypo for months and months now

re facebook stalking - check this out for detective work. I looked on profile here and found out where you live pp - then STILL couldn't match it up! feelingbetter - think its yr turn bab ;) I've a calling for gathering right now

I need to go into the loft and look for cables

[PheasantPlucker]

It will say plucking for a few mins!!!!

[PheasantPlucker]

Herjazz, I can't work out who you are! Radcliffe ref??! I am one of 3 people in the list with the same first name, first one, with feathers status.