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Original poster

epilepsy- absences- experiences please

54 replies

Jimjams2 · 05/11/2006 21:41

DS3 had an absence followed by a period of unconciousness for 8 minutes this week. It's been marked down as a febrile convulsion (which it prob was - his temp was 41.5). However the Romeo thread has got me thinking. There have been a number of times in the last year when I've thought he might be having an absence- he kind of goes of in a trance and doesn't respond- doesn't go stiff or floppy or anything though- not for that long- just like he's lost in thought- 20 seconds ish?

Given that he's now had a kind of confirmed absence should I be worrying about these others (or not worrying, rather, doing something). I don't particularly want him on epilim-in fact I don't want him on epilim at all do they give that for absences? Or are they happy just to monitor.

Hmm was thinking of just observing and if it happens again then taking him to the docs. Would it be terribly irresponsiible to just observe for now? (please say no )

other people by the way have said "oh look he;s in a trance", but I'vbe never saiid to anyone that I thought they could be absences.

OP posts:
lou33 · 06/11/2006 12:36

they can use epilim but i think they tend to use tegretol as first choice

Original poster
Jimjams2 · 06/11/2006 12:45

T hanks Lou. I'm a realm wuss about medications (even calpol!) so am hoping that I've imagined it all!

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mooshy · 06/11/2006 13:09

I had pretty much the same ex. with dd1.Within about 3 months she was having them all the time-usually when tired or excited or hungry.EEG confirmed.She grew out of it but ill be honest and say it really affected her a lot eventually.ie, couldnt go swimming or anywhere where having an absence might be dangerous.We realised her teachers thought she was daydreaming or not listeneing ect.Had to make alot of changes.I am on my lunch break now, but please post tonight if i can be of any help.Please see your gp because sometimes it can take weeks for a referral.

Original poster
Jimjams2 · 06/11/2006 13:11

Thanks mooshy- how old was she? DS3 is only 22 months so I've found it difficult to tell whether he's having one, or whether he's just a bit out of it iyswim.

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Original poster
Jimjams2 · 06/11/2006 13:15

Funnily enough swimming is probably the one thing we could do- we go too a disabled club already- one huy there has a massive seizure almost every week so they're very set up for it.

Oh dear I've been a bit slack ignoring it haven't I? (in my defence I'm still not convinced he;s having them, and I wouldn't have thought about it if he hadn't had the confirmed one last week). It's hard to tell at the moment as he's still ill.

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Bethron · 06/11/2006 13:19

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Bethron · 06/11/2006 13:19

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Original poster
Jimjams2 · 06/11/2006 13:21

Yes I read the age thing as well (school age?) so kind of discounted it. If I keep a diary I guess it will be harder to fob me off! I do want to keep one for a while, because I'm still really not sure.

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Overrun · 06/11/2006 13:26

Skimmed the thread so may not be able to add anything useful, but my dh has simple partial seizures. He appears totally normal, except for him things feel very distant and he can't really understand language. To me, he might look a bit vague (no change there then ) and might say something out of context.
I might mention it if it was my son, but then, children do daydream a lot don't they? And develop selective deafness, so this might account for it as well.
Dh is now completely controlled by medication.

Original poster
Jimjams2 · 06/11/2006 13:31

yes- that's true. When he's in one of these states, you can wave a hand in front of him and he doesn't respond- I'm not sure whether I could have done that to my other 2 or not. Hmm am going to watch and record. He's still so little.

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Original poster
Jimjams2 · 07/11/2006 14:17

ok mso he had one yesterday at tea time. And I'm still none the wiser- my parents were there so I asked them what they thought. And my muim said "he's just tired". My dad waved his hand in front of his face- no response....

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Bethron · 07/11/2006 17:18

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Original poster
Jimjams2 · 07/11/2006 19:10

That's a good idea- he doesn't respond to his name when he's trance like (but does at other times). I'll try clapping next time....

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joanna4 · 08/11/2006 21:58

I take tegretol it is very good much better than some of the other anti convulsants I have tried it has kept me mostly stable -with 2 exceptions for 20 years now.

lou33 · 09/11/2006 10:51

i was allergic to tegretol

Original poster
Jimjams2 · 09/11/2006 10:53

thanks joanna- I haven't noticed anything since Monday. Does anyone know whether they routinely giive meds for absences, or perhaps I should say, do they ever NOT give meds for absences?

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Original poster
Jimjams2 · 09/11/2006 10:53

Thanks to everyone on this thread by the way- much apppreciated.

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lou33 · 09/11/2006 10:57

they try not to routinely give anti convulsants to kids i believe

and in the case of absences i would say it wasnt a necessity as such , because kids arent really at that high a risk of hurting themselves due to an absence, like an adult would be with driving or cooking, for example

Original poster
Jimjams2 · 09/11/2006 11:00

Thanks Lou- I'm a complete wuss when it comes to meds (although for ANY med if the need is great enough I would give- and obviously regular convulsions would be a very good reason too give a med!) I'm just hoping if he does have these things going on that a watch and wait scenario may be something that's commonly done (don't want to go against established protocols or anything).

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lou33 · 09/11/2006 11:06

wtaching and waiting is usually something they do initially unless there is an obvious need for a child to be stabilised immediately

dd1 had convulsions as a child, you know i am epileptic as well

they didnt put her on meds, BUT they did give me some rectal valium to carry about and to store in the fridge in case she had a big seizure

she never did

i also came off my meds because they were making my seizures worse

as soon as i was off them i became seizure free, got my provisional licence and passed my test, so you dont have to be on meds

Original poster
Jimjams2 · 09/11/2006 11:10

oh thanks lou- that's really helpful. A friend's child was given rectal valium. It's so difficult to tell with potential absences when they're little. I don''t know what to make of it really.

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lou33 · 09/11/2006 11:21

absences are at the minor end of the scale for epilepsy,also known as petit mal

if it were my child, and he wasnt being affected by them, i would say no to the meds for the time being, unless i was given a really persuasive argument

Original poster
Jimjams2 · 09/11/2006 19:30

Thanks Lou, my main concern is that I've been totally slack in kind of noticing them, thinking hmmm but not actually doing anything. Sounds like that wasn't too bad though- phew (and I still haven't done anything, but I'm still not sure!).

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lou33 · 09/11/2006 20:36

i wouldnt worry jimjams, us parents carry enough guilt about without looking for more!

Original poster
Jimjams2 · 09/11/2006 20:38

Thanks Lou- normally I think bing part of the slack school of parenting is good, but sometimes I worry about being too slack!

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