Hi guys, taken me a lot to write this, as I am soo upset, I haven't posted for a while, anyway Jack had a video EEG done on Tuesday,his consultant called today and told me that the EEG is still the same as it was when last done, when Jack was 10 months old, he is now 28 months old, Jack is being reduced off keppra and epilim right now until they are stopped completely,however he is still on 6ml nitrazepam twice daily, and now been started on 15mg topomax(this is why the keppra and epilim are being withdrawn) just at night atm....Anyway the consultant when I asked if it's the worst EEG he has seen he said one of the worst, and it is very bad, said still a LOT of epileptic activity going on

So, he said that when he comes bk off few weeks hols when we see him on 29th July he is gonna get repeat EEG done to see if topomax is working or not, if not and EEG is same he is gonna start a course of steriods

Doesn't ths mean they dunno wat else to do??

I am soo worried, I also asked him in terms of Jack having a great life wat will happen there?

He answered me saying " Well...he is struggling"

Just got it in my head he is saying thre is nthn more can be done, and tht my son may die

I have been distraught all day since, I think I will try get hold of consultant in morning to ask EXACTLY what this means????