HemiHelp: Nothing Much New - HemiHelp

Well with a week and a half left till my husband runs the marathon. the fund raising is at full tilt. He can't wait - though he is threatening that it may be his first and last marathon - he's not a natural runner!
So how's eleanor doing. She's doing ok. however she is still struggling with fits. She is having 6-7 infantile spasms a day and has been now for about 6 months. We've tried epilim,keppra, steroids and vigabatrin so far with no success and it's a slow and unrewarding process seeing her having so many fits every day. The hardest thing to deal with is not knowing what to do for the best. Eleanor is globally delayed - we had a developmental appointment the other day and her motor skills are still somewhere down near and 7-9 month olds ( she's 19 months now), the consultant wouldn't give any indication of where she is cognitively, because they don't like to predict these things. She still only has dada language wise and it is grossly apparent that she is no where near where her cousin, the same age, is. The dilema is this. infantile spasms/west syndrome is associated with developmental delay, particularly when you can't control the fits. The drugs you use to treat it can 'slow' children down. What we can't seem to work out is whether eleanor's delay is due to her bleed and hemi or whether it is heightened by her having the fits? Do we treat the fits aggressively with drugs that may zonk her or do we say that the fits are not a big deal and go slowly and gently with trying to stop them? No one can give us an answer. The neurologist (he's quite a new consultant) seems to be going slow and hoping that she grows out of them at the age of two- something i'm not sure is realistic. The paediatrician, couldn't say - he could give us the prognosis on the congenital hemiplegia - good really, mainstream schools etc etc, but couldn't give us any indication of how the west syndrome ( infantile spasms) impact on this.
I'm not good at not knowing the answer to things, and i feel like i'm not getting the answers i need. I just could do with someone to give us an opinion, to tell us what 'in their experience' is likely to happen. I just know it's hard seeing my little girl fit practically every hour i'm with her.