Guest guest Posted July 14, 2004 Report Share Posted July 14, 2004 Matt still takes an hour minimum each meal! Your breakfast saga made me smile because as we are moving house my life is more chaotic than normal so we overslept and I had to send his breakfast on the school bus(with lots of apologies and promises that it would never happen again). We startede Matts wean (epilim ) at 50mg every 2w, disaster!!!!!!We then stopped weaning for a few weeks, then restarted at 25mg every 6-8 weeks, much better. Keep me posted re Bens progress.I did not realise you were in the UK too.Are you at GOSH also? Nicola Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 14, 2004 Report Share Posted July 14, 2004 Hi Nicola Yes we are at GOSH, thank goodness. It took us 15 months to get Ben on the diet because we were due to start it at St s and then we discovered that they don't actually fund the diet there - they have to borrow money from other projects so they can only do one child at a time. At this point we decided to push for GOSH and try to get on the trial. My husband works at the National Hospital for Neurology and Neurosurgery, which is just round the corner, and he had done a bit of work for Helen. One of his colleagues was really helpful contacting Helen's secretary etc. We're in Surrey, though my parents live in North Devon (we love Devon but there's no work for my husband down there!) One seizure only today. This is more than I could ever have dreamed of. I have dragged my way through most of the last five years and at last we are beginning to see the light. Your drug wean sounds incredibly slow - excruciating if we did it at the same rate since we were on 1100 mg a day!! Right now it's going well though I'm holding my breath at the moment as we've just dropped from 700 to 500mg so we may be due a rise in seizure rates, breakfast duration and general stroppiness! Take care Rose Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 15, 2004 Report Share Posted July 15, 2004 pop in and see us next time you are in Devon, nicola Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 15, 2004 Report Share Posted July 15, 2004 pop in and see us next time you are in Devon, nicola Quote Link to comment Share on other sites More sharing options...
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