Guest guest Posted May 3, 2004 Report Share Posted May 3, 2004 Is everyone at GOSH doing the same diet or are people doing variations? We are using a version which allows certain free foods. I understand our local hospital did the diet for my daughter referring to the experts at GOSH, so am interested to see who is doing what. Ginny At 17:15 03-05-04, you wrote: >Francesca had tonic clonics and absences which seem (fingers firmly >crossed) to be controlled by the diet - the Epilim definitely did >work for the tonic clonics, but the diet has seemingly taken over. > >She also has myoclonic jerks - she still does have these seizures but >they're about half of what they were pre diet. I'm convinced once >the Epilim is completely out of her system we'll have a chance to >fine-tune further to gain better control of these seizures too. Ever >the optimist!!! > >Another Mum from GOSH, Nicola, is doing the MCT diet for her son > - I was very jealous when she told me recently that they'd >made bread for him. I have managed pancakes using the Atkins Bake >Mix, so maybe I could try bread, but Francesca's carb allowance is >pretty low... > >What seizures does your daughter have? I gather things are going >well so far??? > >Take care > > >, Mum to Francesca, Keto Kid since Sept 03, less than two weeks >till drug free... > > > > Hi > > > > Thanks for that info, I will give it a try. Its great news that > > Francesca is so close to being drug free, something I can only >dream > > of. It would just alter our lives completely if my daughter became > > seizure free, my heart wouldn't stop each time I heard a bang for a > > start. > > > > What kind of epilepsy does (did) Francesca have? and do you know >any > > others on the trials particularly anyone on the MCT version? > > > > Thanks again > > > > karen > > > > > " The Ketogenic Diet....a realistic treatment option, NOT just a last > resort! " > > List is for parent to parent support only. > It is important to get medical advice from a > professional keto team! > Subscribe: ketogenic-subscribe > Unsubscribe: ketogenic-unsubscribe > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 3, 2004 Report Share Posted May 3, 2004 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 /Ginny Just read your reply to Ginny - hate to butt in here but can you lead me to Ginny's original message - I have copies of the GOSH MCT diet here and would like to know what free foods have been listed for Ginny if her diet was supposed to have been based on the team at GOSH. Again, like you, would like to know hospital and dietician. Glad Francesca is doing well, we will get together soon, all being well. Emma. > > Is everyone at GOSH doing the same diet or are people doing > variations? We > > are using a version which allows certain free foods. I understand > our > > local hospital did the diet for my daughter referring to the > experts at > > GOSH, so am interested to see who is doing what. > > > > Ginny Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 4, 2004 Report Share Posted May 4, 2004 Hi We are on the MCT diet and the only free bits I know of are sugar free lemonade/coke and juices and we don't need to count the sugar free jelly but I am sure they said not more than one a day. we can also use 1/2 teaspoon gravy granules, a pinch of cocoa, and other flavourings as long as they don't contain sugar. (from the top of my head, and still new to it so there are possibly many others) The MCT diet is based on having a list of carbohydrates, proteins, fats, veg and fruit lists and based on individually calculated amounts you choose 2 carbs, 2 proteins, 40g group 1 veg (3 groups different amount from each) and 1 fat and you have to incorporate so much liquigen (MCT oil) with each meal. Its quite good for instance she can have cereal with milk and cream if sweetener required can use certain sugar substitutes. She can have yogurt, or egg on toast, cheese on toast with tomatoe and cucumber, strawberries and cream, meat, veg and gravy etc as long as it has a measured amount of liquigen with it. etc. just everything has to be measured to the gram. Quote Link to comment Share on other sites More sharing options...
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