complex partial seizures and other weird seizurey things.....

[gess]

erm what do they look like?
Been to see ds1's paed today- he has some strange movements, which seem to be quite affected by the environment, but don't seem to be always fully in his control. She wants to rule out seizure actiivity although I think she thinks its unlikely (and I agree), but I was a bit useless when she was asking me about it all because I've only seen ds3 have absence and then full blown seizures in other children. I wouldn;t know a partial comlex or other unusual type if it happened right in front of me......

have a look atthis

Simple explanations of different seizure signs and symptoms, hth

well just read the and none mach dd's

no- because he jerks a lot.

no, she's trying to decide whether to do one.....

I used to work on Complex partial seizures. The difficulty that you will have with ds1 is that many of the diagnostic factors, like althered perception and Auras, will be impossible to guage because ds1 is non-communicative. Similarly other aspects of a CPS like jerkyness or overly repatative movements could be taken for a stim.

Not only would you find it difficult to pick up, but so would a neurologist without an EEG

Otherwse she will not be able to distinguish between CPS and other seizure types

They can last for hours.... He sort of kneels down and jerks backwards repeatedly. HIs muscles are very tense and if I try to say get his leg to extend during it he can't do that. She has asked me to video his face so she can discuss with a colleague. The thing that is very non seizure like though is that it only occurs at certain times. School have never witnessed one, nursery only had one episode, he does it all the time here.

It's really not like a stim- he stims as well, this is diffferent. I don't think seizures are that likely because of the way he seems to have some control - if I say "sit down" he will for a few seconds then goes back to it. It's very odd. Goes on too long for tourettes type thing.

CPS patients can sometimes delay the onset, but I have never come across one who was capable of hearing and following instructions during one. The time thing seems wrond as well. Paient can go into status eplileticus for long periods, but where that happens they tend to be well and truely 'out of it'

The more I learn about seizures, the more trouble I have classifying them!

DD1 has most types. Well, not myoclonic jerks, but most of the other common ones, inc simple partial and complex partial.

Per the E Paed, you can go into status in pretty much any seizure type, though it is less likely with the "milder" ones and less worrying. So where DD1's Diazepam threshold is 5 mins for complex partial motor (generalising but not exactly a TC) it's 30 mins for a simple partial, particularly if it's just a visual disturbance or something. Hard to tell of course because she's noncommunicative, so it's our judgement call really. But eg she'll wander round happily, eat and drink etc - but be absolutely obsessed with something in her left visual field, to the point of walking round in circles continually chasing it.

I find it almost impossible to describe a seizure (particularly partials) well enough for a doc to diagnose from it. In fact, DD1's E paed couldn't describe her seizures properly to the neurologist..... you need video, really, and particularly of the lead-up which is, of course, the hardest bit to get.

Thanks for this. All helpful. I did get some more video tonight, but he's not doing it that much at the moment. I I suppose an eeg would potentially give some answers, but I have no idea how it would even be possible, I just can't see that happening, and I would be loathe to stress him out trying if its very unlikely to find anything. I'll try for a few more days of video.

The real difficulty with diagnosing a CPS, is that many of the tell tale signs require communication. So people frequently have auras, or suddently smell characteristic things.....ds1 isn't going to be able to tell you if this is happeneing.

EEGs can differentite between CPS and T/C et al, and can give information on the focal site within the brain.

The do seem very atypical though.

He's had 2 possible T/C seizures. Both times when he was between waking and sleeping, both several years ago. I tend to think these things are NOT seizures, I just don't know what it is!

When he;s lying down doing it it can prevent him getting back to sleep and if I put my hand on his leg its like his leg muscles are repeatedly contracting and relaxing. I think it was that description that made the doctor wonder about an eeg. She is a lovely paediatrician by the way, listens, remembers us fro year to yar, and has even given me her personal email so I can send her better video if I get it.

gess some of what you describe sounds very similar to ds2's strange movements/periods his paed has put them down to OCD & stims.
ds2 always seems to do it at home & when he is relaxed, but it normally follows a very similar pattern, repeated rubbing of his right hand across his nose & face, his hand is very rigid & claw like & then his head turns looking upwards looking over his left shoulder but up to the ceiling, His legs also go completely rigid, but he has mild CP so they are always a bit on the stiff side.
He can stay like this for ages if we don't interrupt he doesn't respond to us calling him or tickling (which he usually loves) but we rub his chest, slowly & calmly but quite firmly & it seems to do the trick.

thanks mymate- ds1 does also have I think (undoagnosed) tourettes, so it might be part and parcel of a complex tic. I forgot to mention it to the paed tooday (I am hopeless) but I will ask about that when I do. It seems to be particulalry related to stimulation (under or over).

thank you bethron that's very helpfu, the movements there sound kind of similar - how long would that sort of seizure last for?

gess, it took us a while to realise that DD was having seizures. She momentarily seemed to lose control of her head. Then they progressed and it was more obvious it was out of out her control (think you're right, this is what differentiates it from a stim). DD is the most wriggly little girl around and we have managed EEGs by getting her up really early and then giving her a high dose of melatonin. Would that work with your DS?

oh jakB I had no idea your dd had been dx with seizures. I don;t think the melatonin would work- new environments just send him over. Yesterday at school the paed couldn't really even listen to his chest very easily.

Thanks. I've got more video again, missed a very blank/starey session. I;m going to edit it at the end of the week and send the paed a small sample.

btw, I have a friend whose LO had unusual late-onset ASD, and some "twichy" things with it that they thought might or might not be seizures. Eeg came up blank so it turned out to be a tic ... but she is a paediatrician which gives you and idea of how hard this stuff can be to pin down. From her description it sounded very like one of DD1's seizures which are, most definitely, epileptic on eeg. So....

The whole stiffening/raising arm/twisting to one side thing sounds v familiar from DD1's complex partials, fwiw.