Guest guest Posted March 8, 2004 Report Share Posted March 8, 2004 Dear Adam, Welcome to the group, I hope you find it of great benefit and maybe able to contribute to it also. From your e-mail address I get the impression you're located within the UK, if so please could you tell me where your daughter is being treated for the Keto Diet, Best wishes, Phil new to group Hello every one, I'm new to this group My daughter ,recently 2 years old with CP, Global Delays and as yet unlabelled sensory issues has been suffering with infantile spasms since approx 10 months of age. No medication we've tried so far has improved her situation so we've been pushing to get onto the keto diet. We are now about to begin the classic keto diet in April and expect to spend a week in hospital being monitored.We have very little understanding of what the diet involves and I 'm sure there are many things we need to prepare for and wondered if anyone had advice on things we might be doing to make the change in diet less dramatic for our daughter. best wishes to all Adam Stone father of Amelie " 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 March 8, 2004 Report Share Posted March 8, 2004 Dear Adam, Welcome to the group, I hope you find it of great benefit and maybe able to contribute to it also. From your e-mail address I get the impression you're located within the UK, if so please could you tell me where your daughter is being treated for the Keto Diet, Best wishes, Phil new to group Hello every one, I'm new to this group My daughter ,recently 2 years old with CP, Global Delays and as yet unlabelled sensory issues has been suffering with infantile spasms since approx 10 months of age. No medication we've tried so far has improved her situation so we've been pushing to get onto the keto diet. We are now about to begin the classic keto diet in April and expect to spend a week in hospital being monitored.We have very little understanding of what the diet involves and I 'm sure there are many things we need to prepare for and wondered if anyone had advice on things we might be doing to make the change in diet less dramatic for our daughter. best wishes to all Adam Stone father of Amelie " 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 March 8, 2004 Report Share Posted March 8, 2004 Adam - Welcome to the group. My greatest recommendation is to read, read, read. Read everything you could get your hands on. Dr. Freeman at s Hopkins is the main guru (sp?). He has a book out called simply " The Ketogenic Diet. " You can buy it on Amazon, it is a MUST to handling this diet. Ask lots of questions here..............these parents are the greatest..... been thru lots of the stuff that you are going thru now. It is lots of email everyday, but you will learn lots here. By the way....... (it was helpful to me years ago when we were in your spot ---- desperated to hear from parents whether or not this diet was helpful). This diet has been our miracle ----- we went through about 6-8 meds with no help, and the diet reduced my son's seizures by 90%. Don't be scared to get your hopes up. Sure, some kids do not find success with the diet...... but lots do. Welcome to our list. Keep us updated while you initiate. Kathy - Mom to -- keto since 2/00 - age 9 - No Dx - partial complex - mild autism. On Mon, 08 Mar 2004 22:18:10 -0000 " acstone2003 " writes: > Hello every one, I'm new to this group > My daughter ,recently 2 years old with CP, Global Delays and as > yet unlabelled sensory issues has been suffering with infantile > spasms since approx 10 months of age. No medication we've > tried so far has improved her situation so we've been pushing to > get onto the keto diet. We are now about to begin the classic keto > diet in April and expect to spend a week in hospital being > monitored.We have very little understanding of what the diet > involves and I 'm sure there are many things we need to > prepare for and wondered if anyone had advice on things we > might be doing to make the change in diet less dramatic for our > daughter. > best wishes to all > > Adam Stone father of Amelie > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 8, 2004 Report Share Posted March 8, 2004 Adam - Welcome to the group. My greatest recommendation is to read, read, read. Read everything you could get your hands on. Dr. Freeman at s Hopkins is the main guru (sp?). He has a book out called simply " The Ketogenic Diet. " You can buy it on Amazon, it is a MUST to handling this diet. Ask lots of questions here..............these parents are the greatest..... been thru lots of the stuff that you are going thru now. It is lots of email everyday, but you will learn lots here. By the way....... (it was helpful to me years ago when we were in your spot ---- desperated to hear from parents whether or not this diet was helpful). This diet has been our miracle ----- we went through about 6-8 meds with no help, and the diet reduced my son's seizures by 90%. Don't be scared to get your hopes up. Sure, some kids do not find success with the diet...... but lots do. Welcome to our list. Keep us updated while you initiate. Kathy - Mom to -- keto since 2/00 - age 9 - No Dx - partial complex - mild autism. On Mon, 08 Mar 2004 22:18:10 -0000 " acstone2003 " writes: > Hello every one, I'm new to this group > My daughter ,recently 2 years old with CP, Global Delays and as > yet unlabelled sensory issues has been suffering with infantile > spasms since approx 10 months of age. No medication we've > tried so far has improved her situation so we've been pushing to > get onto the keto diet. We are now about to begin the classic keto > diet in April and expect to spend a week in hospital being > monitored.We have very little understanding of what the diet > involves and I 'm sure there are many things we need to > prepare for and wondered if anyone had advice on things we > might be doing to make the change in diet less dramatic for our > daughter. > best wishes to all > > Adam Stone father of Amelie > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 10, 2004 Report Share Posted March 10, 2004 Hi and welcome to the group. I'm fairly new to the group, but you will get great advice from the parents on this group. Just post your question and you will get some answers. As others have probably said, get Dr. Freeman's book. I hope the diet is a success for your daughter. Satnam, mom to Kristan, 15 months Keto kid since August 2003 > Hello every one, I'm new to this group > My daughter ,recently 2 years old with CP, Global Delays and as > yet unlabelled sensory issues has been suffering with infantile > spasms since approx 10 months of age. No medication we've > tried so far has improved her situation so we've been pushing to > get onto the keto diet. We are now about to begin the classic keto > diet in April and expect to spend a week in hospital being > monitored.We have very little understanding of what the diet > involves and I 'm sure there are many things we need to > prepare for and wondered if anyone had advice on things we > might be doing to make the change in diet less dramatic for our > daughter. > best wishes to all > > Adam Stone father of Amelie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 11, 2004 Report Share Posted March 11, 2004 Adam --- Yes, with the onset of the diet, we saw a whole new . Not necessarily jumps in development, but he just plain felt better (it was strange). In retrospect, I'm thinking he was having a lot of headaches maybe that made him feel bad. He hated going outside into the sun. Just a week or so on the diet & he was jumping, laughing and playing outside (while Mom was crying with joy). Of course, the seizures keep him on the couch a lot, so after they stopped he was able to spend more time on learning. He is still very delayed, but I can't help but believe that he would be much further delayed if we were still on all the meds & having all the seizures. 's effect was immediate, but others have a rough start and don't see results until later. The diet sounds hard and complicated, but it's not THAT hard. It will take up a lot of your time at first. But overall, I think the diet saves us time because the seizures & post ictal time was so time consuming. You know how it is....... you always have a plan " B " in case it is a bad seizure day. Overall, the seizure control has saved us time. Good luck on studying the diet. You are always welcome to ask questions. Kathy On Thu, 11 Mar 2004 01:34:32 +0000 adam stone writes: > Thanks Kathy, > Thanks for your positive outlook, funnily enough we do have our > hopes up for > the diet although we try not to get to excited. We're also > extremely > cautious about it , for the last year we've been tip toeing through > that > awful minefield of medication watching intensely for all manner of > side > effects I'm sure you know what I mean! We pray this will work . > Our daughter is very delayed and all we can do is watch in pain and > give her > all our love. We feel the epilepsy is the significant reason for her > delays > and hope ( maybe foolishly) that if we get control she may develop > quicker. > Thanks for your suggestion I will order the book asap. > My wife and I are happy to hear your son is doing well with the > diet, it > must be a wonderful feeling to see such significant improvements in > 's > epilepsy. With the reduction in seizures did you see an improvement > in his > general development? > > best wishes to all your family > > Adam - father to Amelie- > > ________________________________________________________________ The best thing to hit the Internet in years - Juno SpeedBand! Surf the Web up to FIVE TIMES FASTER! Only $14.95/ month - visit www.juno.com to sign up today! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 11, 2004 Report Share Posted March 11, 2004 Adam --- Yes, with the onset of the diet, we saw a whole new . Not necessarily jumps in development, but he just plain felt better (it was strange). In retrospect, I'm thinking he was having a lot of headaches maybe that made him feel bad. He hated going outside into the sun. Just a week or so on the diet & he was jumping, laughing and playing outside (while Mom was crying with joy). Of course, the seizures keep him on the couch a lot, so after they stopped he was able to spend more time on learning. He is still very delayed, but I can't help but believe that he would be much further delayed if we were still on all the meds & having all the seizures. 's effect was immediate, but others have a rough start and don't see results until later. The diet sounds hard and complicated, but it's not THAT hard. It will take up a lot of your time at first. But overall, I think the diet saves us time because the seizures & post ictal time was so time consuming. You know how it is....... you always have a plan " B " in case it is a bad seizure day. Overall, the seizure control has saved us time. Good luck on studying the diet. You are always welcome to ask questions. Kathy On Thu, 11 Mar 2004 01:34:32 +0000 adam stone writes: > Thanks Kathy, > Thanks for your positive outlook, funnily enough we do have our > hopes up for > the diet although we try not to get to excited. We're also > extremely > cautious about it , for the last year we've been tip toeing through > that > awful minefield of medication watching intensely for all manner of > side > effects I'm sure you know what I mean! We pray this will work . > Our daughter is very delayed and all we can do is watch in pain and > give her > all our love. We feel the epilepsy is the significant reason for her > delays > and hope ( maybe foolishly) that if we get control she may develop > quicker. > Thanks for your suggestion I will order the book asap. > My wife and I are happy to hear your son is doing well with the > diet, it > must be a wonderful feeling to see such significant improvements in > 's > epilepsy. With the reduction in seizures did you see an improvement > in his > general development? > > best wishes to all your family > > Adam - father to Amelie- > > ________________________________________________________________ The best thing to hit the Internet in years - Juno SpeedBand! Surf the Web up to FIVE TIMES FASTER! Only $14.95/ month - visit www.juno.com to sign up today! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 13, 2011 Report Share Posted July 13, 2011 Hi, I just joined the list yesterday, and I am already feeling so much better than I have for a long time. I have a lot of questions but I won't overwhelm the list with all of them now. I'll read for a while and see if I get them answered by and by. I have been an unsucessful professional dieter for years. Any major diet book that has ever hit the shelves, I probably have, so my biggest challenge so far is to make myself quit counting. It's very difficult for me, not to be drawn to that food label and start doing my uselss computations. I really liked the post that suggested that a person pick one aspect of IE and focus on that first. I think for me, it would be stopping at full. I've been such a chronic dieter, that I've lost touch with this. The latest diet ploy that is stuck in my head is that one should eat 30 grams of protein for breakfast. I find this very difficult. I ate my breakfast, stopped when I was full, came no where near 30 grams of protein and realize how silly it all was in the first place. I'm so glad this list is here. I have a long way to go, but I'm here fully convinced that no diet will ever work for me. I'm committed to getting to a healthy weight range, and I feel as if I've found a way of eating that I can live with. Thanks for listening, Ann Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 13, 2011 Report Share Posted July 13, 2011 Welcome Ann. You certainly sound as if you are heading in the right direction. Don't be afraid of posting questions, that often helps to remind the rest of us on a topic as well as spark good discussions too. Reading the IE (or related books - see Book List in Files at group site) probably will fill in a few answers, but if you need to know NOW, that's A okay too. One little caution is the temptation to make IE a 'new diet' - trying to find and follow strict 'rules' etc. IE is so NOT about rules! You will find suggestions but the choice is always up to YOU and not for anyone else to impose any eating guidelines. Please do post about any successes you make, even the smallest of babysteps are important and deserve cheering on. And if you get into a funk about your IE journey, believe me you will find that others here have visited those 'dark places' and just may be able to shed some 'light' for you. BEST wishes, Katcha IEing since March 2007 > > Hi, > > I just joined the list yesterday, and I am already feeling so much better than I have for a long time. I have a lot of questions but I won't overwhelm the list with all of them now. I'll read for a while and see if I get them answered by and by. > I have been an unsucessful professional dieter for years. Any major diet book that has ever hit the shelves, I probably have, so my biggest challenge so far is to make myself quit counting. It's very difficult for me, not to be drawn to that food label and start doing my uselss computations. > I really liked the post that suggested that a person pick one aspect of IE and focus on that first. I think for me, it would be stopping at full. I've been such a chronic dieter, that I've lost touch with this. The latest diet ploy that is stuck in my head is that one should eat 30 grams of protein for breakfast. I find this very difficult. I ate my breakfast, stopped when I was full, came no where near 30 grams of protein and realize how silly it all was in the first place. > I'm so glad this list is here. I have a long way to go, but I'm here fully convinced that no diet will ever work for me. I'm committed to getting to a healthy weight range, and I feel as if I've found a way of eating that I can live with. > Thanks for listening, > Ann > Quote Link to comment Share on other sites More sharing options...
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