Guest guest Posted October 7, 2004 Report Share Posted October 7, 2004 Hi Rose here from the UK. Sorry you do not have good support from your doctor on drug-weaning. Our team is fantastic and OK'd the wean without any problem. I too felt that I really wanted to see how the diet could work without the drugs interefering. We were only on Epilim when we started the diet (feb this year) and are off it as of last Thursday. Cause for big celebrations in our house! I don't feel we will see the picture clearly for another month or so. I would really encourage you to hang on with the diet until you get rid of that phenolbarbitol. Ben is sooooo much better all round, even though right now he has more jerks than he has for a while. I put this down to drug withdrawal, and I won't budge on that until my 4-6 weeks is up and then I'll reassess. We've been using MCT because we're on a diet trial at Great Ormond Street in London and that's our version of the diet for now. I'm not sure it affects seizure control unless it pulls the ketones up significantly but it makes our mealplanning way easier. I really hope you have the courage to go right through with the wean so you can see exactly what is going on. It's only fair to to get rid of the drugs gently and give the diet a fair chance or you will never know what could have been achieved. I'm crossing my fingers and toes for you! I too have become very frustrated with some neuros in the past but it's so difficult to stand up to them. You have to live with the epilepsy as much as your daughter though, so don't be brow-beaten. Take care Rose Quote Link to comment Share on other sites More sharing options...
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