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Original poster

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

27 replies

feelingbetter · 31/07/2009 18:31

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

Though we had another year before hearing it.

Am gutted

OP posts:
fatzak · 31/07/2009 18:33

Oh feelingbetter

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

2shoes · 31/07/2009 18:40

so sorry you had such shit news

TotalChaos · 31/07/2009 18:45

very sorry to hear this.

sadminster · 31/07/2009 19:01

That's horrible news I'm so sorry.

Mitchell81 · 31/07/2009 19:03

I am so sorry

lou031205 · 31/07/2009 19:14

Feelingbetter so what's the plan?

sarah293 · 31/07/2009 19:16

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Phoenix4725 · 31/07/2009 19:34

sorry

trace2 · 31/07/2009 19:43

so sorry hugs dont really know what to say!

swineofthetimes · 31/07/2009 20:24

so sorry FB

lingle · 31/07/2009 20:25
Sad
Nyrrem · 31/07/2009 20:35

sorry

5inthebed · 31/07/2009 20:59

So sorry

siblingrivalry · 31/07/2009 20:59

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

Original poster
feelingbetter · 31/07/2009 21:14

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!

OP posts:
Woooozle100 · 31/07/2009 22:25

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

Supportman · 31/07/2009 23:09

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

mysonben · 01/08/2009 00:01

I'm so sorry you had bad news

Original poster
feelingbetter · 01/08/2009 09:58

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

OP posts:
sarah293 · 01/08/2009 10:15

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badkitty · 01/08/2009 10:17

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

sarah293 · 01/08/2009 10:20

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r3dh3d · 01/08/2009 10:43

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

Original poster
feelingbetter · 01/08/2009 11:01

Riven
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 +

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.

OP posts:
sarah293 · 01/08/2009 11:27

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