Guest guest Posted October 13, 2004 Report Share Posted October 13, 2004 Hi Line, Good luck with the diet and brilliant news that you have got on it so quickly and yes, Flora is very young to go on the diet but personally I feel that the sooner you can try the diet after the diagnosis of epilepsy the better - here in the UK things are not that great getting children on the diet. Ketocal is not available over here in the UK at the moment - we cannot get it on prescription at the moment because the relevant authority says that there is not the market for it!!! However I use it as an emergency milkshake for my son and he loves the vanilla flavour. I would imagine that your dietician and yourself would work out a weaning programme for your child and that you could give ketocal in her bottles as you would ordinary milk - however, don't quote me on that one because I have not done that - there will be people around far more experienced than me on having a child that young on the diet. My boy was 7 when he started and has been on the diet over 2 years now and is med free. The diet has been a real god send to him. We have had the odd blip where things have needed changing and that is the area where you may have a few problems - children that young grow so fast that the diet may need what seems to be constant 'fine- tuning' - but it is definitely worth trying. I have set up a charity called 's Friends - the web address being www.matthewsfriends.org - if you want some recipe ideas for the future we have some on there and there is some other information regarding starting the diet etc that you may find useful. We also have a forum and some of the regulars from this group pop in there too as well. There is an absolute wealth of knowledge on here and you will find some great support. Quite a few of us flit between both sites - Matts friends is very new but we are growing all the time and eventually 's Friends will be going into Europe (I have some meetings in Holland etc next year). Hope all goes well. Emma - Mum to - Doing well at the moment but gaining a touch too much weight for my liking! > > Hi. > My name is Line, I live in Denmark and I'm mother of Anton (almost 5) > and Flora (7 months). Flora was diagnosed with infantile spasms when > she was 4 months old. So far, no underlying cause of the epilepsy has > been found. We have tried several drugs; Vigabatrin, Prednisone, > Rivotril (benzodiazepine), Topimax, and - as of today - Deprakine > (valproate). Rivotril has reduced the spasms, but she is weaned off > that now because we were supposed to start the ketogenic diet > yesterday. Unfortunately that didn't happen, but we hope to start it > next thursday instead. > I would very much like to hear about other parents experiences with > starting the ketogenic diet in children as young as Flora (is it hard > to introduce ketocal?, when and how do you introduce " ordinary " > food?), and in children with infantile spasms (did it reduce spasms?, > did you see any improvement of psychomotor development?). > Hope to hear from you soon. > Line Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 15, 2004 Report Share Posted October 15, 2004 Sorry so late replying to this. Hannah has been sick with a cold and we all know what that is like with increased seizures, etc. Hannah was 6 months when we started an official keto diet with her. The ketocal did not allow for enough flexibility with ratio and fat/carb values and we were unable to achieve ketosis on it. Hannah's formula now is: 297g RCF (Ross Carbohydrate Free Formula) 189g water 15g unsweetened apple juice (this is where we get the carbs) 34g canola oil and then the added vitamin and mineral supplements. I don't have the figures in front of me, but Hannah is on very limited carbs (always has been) this formula has only 1.19g carbs. The great dilemma with the babies is that they need carbs for brain development but too many carbs leads to seizures which of course, limits brain development. Hope this helps! Re: Denmark calling ;o) Hi Line, Good luck with the diet and brilliant news that you have got on it so quickly and yes, Flora is very young to go on the diet but personally I feel that the sooner you can try the diet after the diagnosis of epilepsy the better - here in the UK things are not that great getting children on the diet. Ketocal is not available over here in the UK at the moment - we cannot get it on prescription at the moment because the relevant authority says that there is not the market for it!!! However I use it as an emergency milkshake for my son and he loves the vanilla flavour. I would imagine that your dietician and yourself would work out a weaning programme for your child and that you could give ketocal in her bottles as you would ordinary milk - however, don't quote me on that one because I have not done that - there will be people around far more experienced than me on having a child that young on the diet. My boy was 7 when he started and has been on the diet over 2 years now and is med free. The diet has been a real god send to him. We have had the odd blip where things have needed changing and that is the area where you may have a few problems - children that young grow so fast that the diet may need what seems to be constant 'fine- tuning' - but it is definitely worth trying. I have set up a charity called 's Friends - the web address being www.matthewsfriends.org - if you want some recipe ideas for the future we have some on there and there is some other information regarding starting the diet etc that you may find useful. We also have a forum and some of the regulars from this group pop in there too as well. There is an absolute wealth of knowledge on here and you will find some great support. Quite a few of us flit between both sites - Matts friends is very new but we are growing all the time and eventually 's Friends will be going into Europe (I have some meetings in Holland etc next year). Hope all goes well. Emma - Mum to - Doing well at the moment but gaining a touch too much weight for my liking! > > Hi. > My name is Line, I live in Denmark and I'm mother of Anton (almost 5) > and Flora (7 months). Flora was diagnosed with infantile spasms when > she was 4 months old. So far, no underlying cause of the epilepsy has > been found. We have tried several drugs; Vigabatrin, Prednisone, > Rivotril (benzodiazepine), Topimax, and - as of today - Deprakine > (valproate). Rivotril has reduced the spasms, but she is weaned off > that now because we were supposed to start the ketogenic diet > yesterday. Unfortunately that didn't happen, but we hope to start it > next thursday instead. > I would very much like to hear about other parents experiences with > starting the ketogenic diet in children as young as Flora (is it hard > to introduce ketocal?, when and how do you introduce " ordinary " > food?), and in children with infantile spasms (did it reduce spasms?, > did you see any improvement of psychomotor development?). > Hope to hear from you soon. > Line " 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 October 15, 2004 Report Share Posted October 15, 2004 Sorry so late replying to this. Hannah has been sick with a cold and we all know what that is like with increased seizures, etc. Hannah was 6 months when we started an official keto diet with her. The ketocal did not allow for enough flexibility with ratio and fat/carb values and we were unable to achieve ketosis on it. Hannah's formula now is: 297g RCF (Ross Carbohydrate Free Formula) 189g water 15g unsweetened apple juice (this is where we get the carbs) 34g canola oil and then the added vitamin and mineral supplements. I don't have the figures in front of me, but Hannah is on very limited carbs (always has been) this formula has only 1.19g carbs. The great dilemma with the babies is that they need carbs for brain development but too many carbs leads to seizures which of course, limits brain development. Hope this helps! Re: Denmark calling ;o) Hi Line, Good luck with the diet and brilliant news that you have got on it so quickly and yes, Flora is very young to go on the diet but personally I feel that the sooner you can try the diet after the diagnosis of epilepsy the better - here in the UK things are not that great getting children on the diet. Ketocal is not available over here in the UK at the moment - we cannot get it on prescription at the moment because the relevant authority says that there is not the market for it!!! However I use it as an emergency milkshake for my son and he loves the vanilla flavour. I would imagine that your dietician and yourself would work out a weaning programme for your child and that you could give ketocal in her bottles as you would ordinary milk - however, don't quote me on that one because I have not done that - there will be people around far more experienced than me on having a child that young on the diet. My boy was 7 when he started and has been on the diet over 2 years now and is med free. The diet has been a real god send to him. We have had the odd blip where things have needed changing and that is the area where you may have a few problems - children that young grow so fast that the diet may need what seems to be constant 'fine- tuning' - but it is definitely worth trying. I have set up a charity called 's Friends - the web address being www.matthewsfriends.org - if you want some recipe ideas for the future we have some on there and there is some other information regarding starting the diet etc that you may find useful. We also have a forum and some of the regulars from this group pop in there too as well. There is an absolute wealth of knowledge on here and you will find some great support. Quite a few of us flit between both sites - Matts friends is very new but we are growing all the time and eventually 's Friends will be going into Europe (I have some meetings in Holland etc next year). Hope all goes well. Emma - Mum to - Doing well at the moment but gaining a touch too much weight for my liking! > > Hi. > My name is Line, I live in Denmark and I'm mother of Anton (almost 5) > and Flora (7 months). Flora was diagnosed with infantile spasms when > she was 4 months old. So far, no underlying cause of the epilepsy has > been found. We have tried several drugs; Vigabatrin, Prednisone, > Rivotril (benzodiazepine), Topimax, and - as of today - Deprakine > (valproate). Rivotril has reduced the spasms, but she is weaned off > that now because we were supposed to start the ketogenic diet > yesterday. Unfortunately that didn't happen, but we hope to start it > next thursday instead. > I would very much like to hear about other parents experiences with > starting the ketogenic diet in children as young as Flora (is it hard > to introduce ketocal?, when and how do you introduce " ordinary " > food?), and in children with infantile spasms (did it reduce spasms?, > did you see any improvement of psychomotor development?). > Hope to hear from you soon. > Line " 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...
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