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Original poster

dd just had a cluster of seizures

18 replies

TheDMshouldbeRivened · 29/08/2009 19:53

After 6 months eizure free (apart from the status seizures) she has just been on my lap and had a series of stiffenings.
I feel like crying. We just put her meds up too
This must be the start of full blown lennox gastaut

OP posts:
IUsedToBePeachy · 29/08/2009 19:56

No it mightnot be sweetheart, don't panuic too much (I know, easy to say fucking impossible to do)

Is she going off to hospital or do you have to wait until monday to speak to someone?

It's pointless saying hope for the best I know, so I will do the hoping for you and just try and get thropough the next few days.

If you don't mind I willpray, I think our Gods are pretty much the same bloke all in all

Original poster
TheDMshouldbeRivened · 29/08/2009 19:58

have to wait till wednesday till her paed is bach at work.
I feel sick.

OP posts:
IUsedToBePeachy · 29/08/2009 20:01

Of course you do

Isn't there anyone at the hospital at all?

Is there anything otehr than LG that could cause this- new batch of meds, weight gain, virus.....

Original poster
TheDMshouldbeRivened · 29/08/2009 20:03

she's had this virus but is getting better. Rash is almost gone. So yes, that could trigger breakthroughs. But no breakthroughs when her temp was 102F.
She really is on a knife edge for LGS. She has the EEG pattern but up until half an hour ago was not having daily seizures.

OP posts:
r3dh3d · 29/08/2009 20:03

It might be a reaction to the meds increase, being as you are at higher levels.

Is this the Keppra they are putting up?

Original poster
TheDMshouldbeRivened · 29/08/2009 20:03

yup. Cos her weight had increased by 2kg since the last raise.

OP posts:
IUsedToBePeachy · 29/08/2009 20:06

There are a few possibles then Riv. And when a few possibles are combined, that makes a decent chnce doesn't it?

No guaranbtees though, I know

RIdiculous there'sno back up at the hospital

Phoenix4725 · 29/08/2009 20:10

oh no , and im guessing no point phoning ward

r3dh3d · 29/08/2009 20:10

You do know that Keppra "clusters" seizures, presumably more so at the higher doses? It seems to store them up rather than switch them off, iyswim. DD1 keeps getting 3 or 4 good weeks and then 1 stinker - she had 9 seizures last Sunday. Sod all today, an average of 1 or 2 a day this week - which is "normal" for her. It seems fairly common, the paed didn't warn us but school nurse threw it into conversation as if it happened to everyone on it, and Epilepsy nurse agreed. It's a bugger because I can't tell whether each episode is illness or the Keppra or the start of things going permanently downhill. You just don't know till you look back a few days later. We had one about a month and a half ago where we had to give her a 5 day blast of clobozam to get her out of it. But then again last weekend she just clicked out on her own. And the rest of the time it does seem to be doing a pretty good job. She's very alert and burbly.

Not trying to be all Pollyanna about it - know exactly how unhelpful that would be - but with Keppra, you have to take the looooong view. You can't tell anything from 1 bad day or 3 bad days, you have to count in weeks. Fingers tightly crossed for you that it's just a blip. But I'm afraid if it is then this may be how it's going to be from now on.

feelingbetter · 29/08/2009 20:27

Thinking positive thoughts for you
IME there's no point in dealing with anyone other than your normal neuro, they just won't do anything.
Hope its just a blip x

MatNanPlus · 29/08/2009 21:03

Thinking of you all.

2shoes · 29/08/2009 21:23

riven so sorry to see this, i know it is so horrid,
dd used to have a cluster, then a biggie, usually it was when she was over excited,
I do hope she is ok, and you too

Original poster
TheDMshouldbeRivened · 30/08/2009 06:15

they were weird. Usually she myoclonic jerks - head jerks back, atms come up. These were more a quick stiffening of arms and legs, no head involvment at all. And slightly longer. She was aware throughout. And of course, ina scary infantile spasm like cluster. Very twitchy in her sleep all night too.

OP posts:
Phoenix4725 · 30/08/2009 06:32

sigh was going ask how she was this morning ,

And sucks need to wait till WEds,

BriocheDoree · 30/08/2009 06:35

Sorry Riven, it sucks. Poor DD

Original poster
TheDMshouldbeRivened · 30/08/2009 06:58

nice to see other people are up at crack of sparrow fart too
Got an in-law visit today and I belive they are planning to stay the night. Maybe I'll just kill myself now.
They'll come in, sit on the sofa and expect to be served lunch/tea despite me being wobbly and DH doing all this with dd carried over one shoulder. We'll tell them about the life limiting/lennox gastaut thing and MIL will sit there grinning because she doesnt 'do emotions' and anyway, disabled people are better off dead. And they will hapr on and on and on about exam results and universities and how if you don't go to a top uni you are worthless. then they'll want dinner.
Then they'll ignore me saying please don't clatter in the kitchen after dd has gone to bed because her bedroom is next to it and if she's woken she will have a life threatening seizure.
AND MIL will fill the kettle to the brim for one bloody cup of tea because she hates the environment.
argh.
As you were

OP posts:
Phoenix4725 · 30/08/2009 07:55

ah see when I split with xh his family could not drop us quick enough mind be bit extreme in yourcase , must admit did not cry over it only fact took me so long to do lol

i would be tempted to order in pizza and serve in box with a do ya want ketchup with that

trace2 · 30/08/2009 08:26

sorry about dd i hope its one of the other things peachy mentioned not LG. ((((hugs)))

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