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I need to get my head around this epilepsy lark...

(13 Posts)
lou031205 Mon 03-Aug-09 09:17:54

DD had been clear of seizures since January, but last month had some absences. Spoke to paed, who said to increase her Epilim to 6 mls. He said that she was nearly at max dose, and 6.5mls would be absolute max for her weight.

The last few days I saw the occasional 'funny look', and DD seemed a bit slow at these times. Today she had an 'episode' - deep rapid blinking for about 10 seconds, downcast eyes, no response. When she responded she said she felt sick (speech delay so not nec. accurate).

Can anyone tell me:

-She is going up to 6.5 mls, but if that doesn't work, what next?
-Is there a hierarchy of seizure type? Do absences matter less than, drops, or tonic-clonics?
-How are you meant to video them if they are only lasting 15-30 secs? Arrrggh.

fatzak Mon 03-Aug-09 09:25:39

Good morning Lou! We went down the epilim route but after going to the max ended up on Keppra but now on tegretol!! Still no complete control sad

Re seizure types - I always get more freaked out with tonic clonics than any other sort. Mind you, if I can tell that he is breathing, I can cope with it more! We didn't have any experience of absences until this Feb when DS suddenly startted with them then very quickly ended up in non convulsive status sad

The videoing is just chance isn't it? We are lucky in that DS seizures usually happen as he falls asleep so it's quite easy to be armed with a camera!!

Am just starting a thread about travel insurance as now that DS has been in hospital this year we are struggling to get any sad

lou031205 Mon 03-Aug-09 14:00:50

Thanks & bump

r3dh3d Mon 03-Aug-09 14:51:58

1) max, my arse. The more experienced the doctor, the more gung-ho their approach to meds. With the Valproate it's all about the side-effects - if you go above about 1.5 times the clinical recommended dose you are at risk of internal bleeding but it varies per patient and we were just told to keep a look out for higher than usual amounts of bruising. What does your DD weigh?

Re: what next - well valproate is (famously) a first-line med, ie a thing they try first because it is reliable and low in side effects. If it doesn't work on its own they either add a second line med, or they swap it. They are unlikely to add/swap another first-line.

Otoh, this could be a temporary loss of control due to eg a lurgie, in which case you may get a short burst of something effective but not appropriate for long-term use. Clobozam or steroids usually.

2) Hierachy - depends on all sorts of things. Medication, current control, type of epilepsy, individual recovery. TCs involve the whole brain so are inherantly more dangerous than any partial seizure. But 2 of those a year can have much less effect on your concentration and learning than an absence every 2 minutes. Because DD1 is heavily medicated, this supresses the seizures to the point where they only break through as relatively mild events. Because of this if she has a serious motor seizure then odds are we'll end up in hospital soon because it means we've lost control and she'll go status sooner or later.

Generally speaking, I think absences aren't worrying as long as they aren't affecting her. They tend to be fairly brief. DD1 has a lot of simple partials which sound similar but can be long. If it's any comfort our protocol for TCs is to give emergency meds after 5 minutes. For a simple partial/atypical absence, it's 20 or 30 minutes depending on context.

3) Video - yeah. I dunno. On your camera phone which you have with you at all times, I guess, hmm though of course you won't catch the start and the start is often the bit they are most interested in.

lou031205 Mon 03-Aug-09 15:07:59

r3dh3d she weighs 14.4kg. 6.5mls bd puts her on 36mg/kg/day.

r3dh3d Mon 03-Aug-09 15:44:36

OK, well that's more than usual (which seems to be between 25 and 60 though 60 is for IS/Wests according to BNF) but still less than DD1 and DD1 is not on the highest she's ever been on. She's currently at 44mg/kg daily, plus the other stuff. They recommend taking regular bloods for liver function above 40 so we're clearly approaching risky territory.

SJisontheway Mon 03-Aug-09 16:23:59

DD was up to 9ml twice a day at one point. At the time she would have been less than 13kg though. It was not successful. With each increase she got sleepier and was napping several times a day. Although the constant seizures would have been making her tired too. We then started on Zarontin and gradually reduced the epilim although she's still on 4ml x 2. The zarontin has been great for DD. It was mainly absences she was having, also some drops and partials. She had no seizures for a few months, but the absences have just come back. We've upped the dose so fingers crossed it will do the trick. As someone else said, the epilim seems to be the first choice, but it seems very common to have to introduce something else. Best of luck

lou031205 Mon 03-Aug-09 16:31:33

Yeah, I noted that in the BNF, too. We see the Paed on the 19th, and the dose is based on her weight in May, so perhaps now she will be sightly heavier anyway, so that will give her a bit more scope.

fatzak Mon 03-Aug-09 17:03:51

When do neuros tend to start to go with these newer meds? We've tried epilim,keppra and carbamazepine but not got control yet so wondering what and when they'll suggest next!!! Guess it depends on what the PET scan shows .

changenameruk Mon 03-Aug-09 17:42:51

hi dd is on epilim for absences. She was on 7.5ml x 2 a day and she was only 5 (not sure what her weight was but is only a olittle slip of a thing) after nearly a year with no absences we were told to decrease dose to 7.5ml once a day. but she now has the odd absence maybe once a week.

feelingbetter Mon 03-Aug-09 18:40:37

I think we have exceeded the 'max dose' on every med DS has had.
Had a long convo with neuro about it this week about having to prescribe out of weight/age range pretty often.
FWIW, DS has Epilim at 40mg/kg/day.

It seems that (to me at least) neuros are far less concerned about absences than any other type.
We suspected absences with DS for some time, but his neuro was only concerned when another new seizure type appeared alongside it.
It doesn't make it any less worrying for us though sad

As to videoing - I do it on my digital camera which comes with me wherever DS & I are. As more of a pattern developed, I could predict with some certainty when the next one would happen.

sarah293 Mon 03-Aug-09 19:10:03

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sarah293 Mon 03-Aug-09 19:10:18

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