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Seems it's Lennox-Gastaut week then.......

(28 Posts)
feelingbetter Fri 31-Jul-09 18:31:57

....DS had his EEG yesterday and neuro phoned today with the news.

Though we had another year before hearing it.

Am gutted sad

fatzak Fri 31-Jul-09 18:33:46

Oh feelingbetter sad

We had an EEG and PET scan on Wednesday and I am a wreck waiting for our news.

2shoes Fri 31-Jul-09 18:40:59

sad so sorry you had such shit news

TotalChaos Fri 31-Jul-09 18:45:17

very sorry to hear this.

sadminster Fri 31-Jul-09 19:01:13

That's horrible news I'm so sorry.

Mitchell81 Fri 31-Jul-09 19:03:15

I am so sorry

lou031205 Fri 31-Jul-09 19:14:34

Feelingbetter sad so what's the plan?

sarah293 Fri 31-Jul-09 19:16:20

Message withdrawn

Phoenix4725 Fri 31-Jul-09 19:34:35


trace2 Fri 31-Jul-09 19:43:55

so sorry hugs dont really know what to say!

swineofthetimes Fri 31-Jul-09 20:24:56

so sorry FB

lingle Fri 31-Jul-09 20:25:11


Nyrrem Fri 31-Jul-09 20:35:59


5inthebed Fri 31-Jul-09 20:59:05

So sorry sad

siblingrivalry Fri 31-Jul-09 20:59:43

Oh, no. I'm so sorry you are going through this. x

feelingbetter Fri 31-Jul-09 21:14:48

No details from EEG report yet, but at the mo he is having myoclonics (which he's had forever), atonic and absence seizures. Have suspected absences for some time, but have not been confirmed before. No tonic/clonics ATM.
Myoclonics have changed and increased in intensity over the last few weeks, became a very strong startle spasm, then came in clusters, then the knees started coming up just like in IS. When they came in clusters again, I knew we were in trouble.
He is now having 30 ish clusters a day, between 5 & 10 in a cluster. Just a few atonics here and there, and the absences are very difficult to count.

At the moment he is well and untroubled by them - unless of course he is on his tum, learning to weight bear on his arms and ends up flat on his face. Came in handy today when the bloke from Leckey was here to measure him for his seat - got us a loan of a squiggle early activity system which DS loves!

We will pick up his new meds tomorrow, which I assume is the rufinimide.
Keto diet not an option at the mo as DS is lactose free after a dose of rotavirus earlier this year (tho we have slowly started re-introducing milk now up to 90mls a day and he is doing fine) and we would need the all clear from his endocrinologists.
Will definitely be a serious consideration over the next few months if he is metabolically well (IYKWIM?). I think he is and will push for it. I'm right good at being pushy these days!

Woooozle100 Fri 31-Jul-09 22:25:43

so sorry FB. Hope you see things improve with new medication. What a terrible worry for you all.

Supportman Fri 31-Jul-09 23:09:41

Sorry to hear that and hope that the Rufinimide does its job.

mysonben Sat 01-Aug-09 00:01:39

I'm so sorry you had bad news sad

feelingbetter Sat 01-Aug-09 09:58:02

Am now armed with half a ton of rufinamide and a pill crusher, so here it begins!
Will let you know how it goes x

sarah293 Sat 01-Aug-09 10:15:28

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badkitty Sat 01-Aug-09 10:17:18

So sorry FB and Riven that you have both had this horrible news - big hugs to you both.

sarah293 Sat 01-Aug-09 10:20:52

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r3dh3d Sat 01-Aug-09 10:43:38

Very sorry to hear this FB. Hoping the rufinimide does the trick.

feelingbetter Sat 01-Aug-09 11:01:43

Really? I must read into it more deeply. Everything I have looked at seems reliant on milk, cream, butter and cheese for the fat. Just thinking about it more now, there obviously must be a way - it just seems so much easier to cook everything in butter and serve it with a nice creamy sauce blush + <lazy mother emoticon>

We should be OK though. We have 5 weeks of increasing the rufinamide dose, so by the time we know whether it's going to work or not, we should be fairly clear whether DS is over his intolerance. I think he is over it, but am taking baby steps on the re-introduction, just to be sure.

I am feeling much brighter today now that we have the drug and can do something.

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