Guest guest Posted May 3, 2004 Report Share Posted May 3, 2004 Hi , Have been reading your posts etc. I am Emma and my son was on the trial at GOSH, he has been on the diet for over 18 months - He is now DRUG FREE AND DOING BETTER THAN EVER - it took me years to get on the diet and whilst waiting, he had so many seizures that he has suffered brain damage. He will always be disabled, but his quality of life is 200% better now than it used to be pre-diet. If I had got him on the diet when I first asked for it, would have been saved 24,720 seizures - absolute minimum - and those were just taking figures from the ones I knew about. His seizures have been reduced by about 90%. I work with the team at GOSH as I am setting up 's Friends and I am the parent advisor for KetoPAG. I noted that you see Dr. Cross at NCYPE - which is about 5 minutes away from me. I see that you have been in the very capable hands of (there is NOTHING that woman does not know about getting a keto kid to poo!!!) which is why I wasn't going to let her get away and not come on board with 's Friends. was classical but I am slowly going to change him over to MCT and I have all the details of the GOSH MCT version here. This is an excellent group for support, the knowledge here is wonderful. There is now a 's Friends group as well under the Ketogenic heading - I set one up last week if you want to pop into that one as well. I know that some of the other trial parents are planning on going on as well. Best Wishes, Emma . Mum to - Keto kid since July 2002. > Hi Ginny > > We are taking part in the trials based at GOSH, although we see Dr > Cross at NCYPE (St Piers). > > As far as I am aware the trials are to see if the MCT version works > as well as the Classic Ketogenic Diet, and the MCT version is based > around taking Liquigen with each meal, I don't know much about the > Classic Diet but I understand its stricter. The trials also double > up as clinical trials on the Ketogenic diet in the UK. > > Like I say my knowledge is basic as we are still quite new to it. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 3, 2004 Report Share Posted May 3, 2004 Hi nice to hear from someone else on the trials and I will look up the other group. I live about 15-20 minutes from NCYPE I also believe my daughter has suffered irreversible brain damage due to the amount of huge bangs on the head and the ever increasing number of seizures. She is 16 and started with epilepsy age 6, diagnosed with Lennox Gastaut about age 13 and has gone downhill rapidly since then. I am currently setting up a branch of Epilepsy Action as I feel very strongly about the negative effect of the paternalistic attitude of many consultants towards patients and families. I would like to help educate people of their rights and inform them of the many options there are particularly alternative remedies, if it doesn't cause any harm we should be informed about it to make up our own minds, as the healing power of some form of control on the whole family is only ever beneficial. It is the feeling that there is nothing you can do which drags us down and creates an inability to cope. Anyway off the soap box Nice to hear from you Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 3, 2004 Report Share Posted May 3, 2004 Hi nice to hear from someone else on the trials and I will look up the other group. I live about 15-20 minutes from NCYPE I also believe my daughter has suffered irreversible brain damage due to the amount of huge bangs on the head and the ever increasing number of seizures. She is 16 and started with epilepsy age 6, diagnosed with Lennox Gastaut about age 13 and has gone downhill rapidly since then. I am currently setting up a branch of Epilepsy Action as I feel very strongly about the negative effect of the paternalistic attitude of many consultants towards patients and families. I would like to help educate people of their rights and inform them of the many options there are particularly alternative remedies, if it doesn't cause any harm we should be informed about it to make up our own minds, as the healing power of some form of control on the whole family is only ever beneficial. It is the feeling that there is nothing you can do which drags us down and creates an inability to cope. Anyway off the soap box Nice to hear from you Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 3, 2004 Report Share Posted May 3, 2004 Hi nice to hear from someone else on the trials and I will look up the other group. I live about 15-20 minutes from NCYPE I also believe my daughter has suffered irreversible brain damage due to the amount of huge bangs on the head and the ever increasing number of seizures. She is 16 and started with epilepsy age 6, diagnosed with Lennox Gastaut about age 13 and has gone downhill rapidly since then. I am currently setting up a branch of Epilepsy Action as I feel very strongly about the negative effect of the paternalistic attitude of many consultants towards patients and families. I would like to help educate people of their rights and inform them of the many options there are particularly alternative remedies, if it doesn't cause any harm we should be informed about it to make up our own minds, as the healing power of some form of control on the whole family is only ever beneficial. It is the feeling that there is nothing you can do which drags us down and creates an inability to cope. Anyway off the soap box Nice to hear from you Quote Link to comment Share on other sites More sharing options...
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