Guest guest Posted November 15, 2004 Report Share Posted November 15, 2004 Hi , I think all the kids react different with the new carb friendly products out there. my daughter cannot have splenda, causes grand mals with her, so we use stevia. Also, the net carbs are not taken out of the regular meal plans so the same would go for the atkins foods too. We don't subtract them, but our daughter is still challenged with way too many seizures. We did however wean the diazepam, but she's now on an emergency dose of klonopin, trying to break a vicious cycle of status events that seem to occur every 7 days. She goes in for the VNS on friday, so that is her next step in this endless battle. If you are thinking of adding any of the atkins products, do so in small amts, then you'll know if anything causes a trigger. There is a group over in the UK called sfriends.org they have a couple parents on there that use the muffin/pancake mixes, you could check them out for ideas and their thoughts. Stella does not like the atkins pancake mix, so I make her a pancake using egg, flax, almond meal, coconut and add a drop of the stevia, and some maple flavouring to the butter. Similiar recipe for muffins too, which are a hit. This is a fantastic group, lots of knowlegable parents, I know i'd be lost without them!!!!! I thrilled to hear about the success with your daughter, and at the age of 22, I think that is setting a record. amanda -- -mom to Stella, 5years old, started keto diet May 10th 2004 still waiting to be seizure free. Also on Lamictal, epam and Diamox. Anisa is almost 10 and a happy healthy girl. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 16, 2004 Report Share Posted November 16, 2004 My son seemed to have problems with Splenda so we don't use it. I'm also just leary about the artificial sweetener things. I suppose you could always check in with Hopkins, unless you are followed somewhere else. It's nice to see an adult on the diet - you don't see that much. We are long term too, my son is turning 9 next week and has been on it since age 17 months. Welcome. Barb Swoyer, Jake's mom Splenda? > > > Hi, My name is . I'm new to the group. My daughter, , > is 22. She has been on the diet since 1996. The diet works well > and we have made a lot of progress, but we can't get her completely > off the benzodiazapenes she has been on for most of her life. My > question is -- many new products have come out with all the " low- > carb " craze -- do you all use Splenda products? What are the > dieticians saying? She started the diet at Hopkins, but we have not > been back for a couple of years now so I'm not up to date. I also > wondered about the " net carbs " that Atkins talks about -- can we > apply that at all? We have been extremely careful with her diet and > I think that is why it has been so successful. So, I am very > reluctant to try something new. However, it looks like she may be > on the diet for a long time and it would be nice to make it more > interesting. Thanks for your help. > > > > > > > " 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 November 16, 2004 Report Share Posted November 16, 2004 Splenda is a popular topic on another group of mine lately, too. The majority of parents and dieticians are saying avoid it. Definitely avoid it in the powder form- if you are using a sweetener, use liquid forms like liquid Sweet & Low, Sweet 10, Stevia, etc. Splenda doesn't come in a liquid form so far (as far as I know). You will find it in Diet Rite, etc. It is one of those things you can try and see if you notice any reactions. Other parents have noticed increased seizures because of it, but they are not all on the keto diet as well. Mom to Noah- age 3 & seizure-free on keto Barbara Swoyer bswoyer@...> wrote: My son seemed to have problems with Splenda so we don't use it. I'm also just leary about the artificial sweetener things. I suppose you could always check in with Hopkins, unless you are followed somewhere else. It's nice to see an adult on the diet - you don't see that much. We are long term too, my son is turning 9 next week and has been on it since age 17 months. Welcome. Barb Swoyer, Jake's mom Splenda? > > > Hi, My name is . I'm new to the group. My daughter, , > is 22. She has been on the diet since 1996. The diet works well > and we have made a lot of progress, but we can't get her completely > off the benzodiazapenes she has been on for most of her life. My > question is -- many new products have come out with all the " low- > carb " craze -- do you all use Splenda products? What are the > dieticians saying? She started the diet at Hopkins, but we have not > been back for a couple of years now so I'm not up to date. I also > wondered about the " net carbs " that Atkins talks about -- can we > apply that at all? We have been extremely careful with her diet and > I think that is why it has been so successful. So, I am very > reluctant to try something new. However, it looks like she may be > on the diet for a long time and it would be nice to make it more > interesting. Thanks for your help. > > > > > > > " 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 November 16, 2004 Report Share Posted November 16, 2004 Hi .... welcome! How good to hear that the diet has worked well for your daughter for all these years. She's a trooper to stay on it as long as she has (and so are YOU). One of my best friends named also has a daughter (her third child) named spelled with an " e " too. Her is 21. Like just about everything else with seizures and the keto diet, what works well for some may not work at all for others. It's such an individual thing. We were not allowed to use powdered Splenda or any sugar alcohols for the first six months. We were allowed to use diet soda made with Splenda because liquid splenda added to foods has zero carbs. It is not available to the public in that form, though--only to food manufacturers who add it to their products ( We used aspartame without any problems (but this is a seizure trigger for some kids, too)as well as stevia. After 6 months on the diet (seizure free) my daughter was allowed to try 1 piece of Extra sugar free gum twice a week. That was her big treat! Once that worked, we could use a small amount of powdered splenda or splenda packets. Now we can use as much as we want. We have had no problems. Our dietician did a lot of research on Splenda with regard to its appropriateness for keto and eventually found nothing to keep her from allowing it. She still doesn't allow it at first, but if kids are doing well, they get to try it sooner than we did. She told me she has had a " few " patients who didn't do well with it, but overall it has worked well in her recent experience. If you were followed at Hopkins previously, you might call and ask the dietician what she thinks. My thought is that the only to really know if it will be o.k. for is to try it. Every " body " is so different in how it reacts to different things. If you do decide to try, I would use just a little at first. Maybe try the diet sodas first (Hansen's natural (our fav) and Diet Rite are sweetened with it) because it has no carbs. The powdered splenda that measures like sugar has 0.5g of carb per teaspoon. The packets have 1.0g of carb per packet which is equal to the sweetness of 2 teaspoons of sugar. So, carb-wise, they are essentially the same. The carb is from a v. small amount of dextrose and the rest is maltodextrin. When we were on strict keto, we could not do " net carbs " . Now we are allowed to subtract out dietary fiber and sugar alcohols but we have a different formula to use, so our " net carbs " usually come out higher than what is on the package by a gram or two. We are in the process of weaning slowly off the diet now, though, so we are not the " norm " . I don't know for sure, but I doubt our dietician allows kids on full keto to calculate " net carbs " . There are a LOT of foods out there now that could fit into keto IF the sweeteners aren't a problem. It would be great to have more variety, but you also want to maintain the seizure control she has now. I really think you are the only one who can make the call whether it would be worth it to experiment a bit. Good luck... and again, welcome to the group. Cammie Mom to , age 8, seizure free 15 months on keto, currently weaning slowly. > > Hi, My name is . I'm new to the group. My daughter, , > is 22. She has been on the diet since 1996. The diet works well > and we have made a lot of progress, but we can't get her completely > off the benzodiazapenes she has been on for most of her life. My > question is -- many new products have come out with all the " low- > carb " craze -- do you all use Splenda products? What are the > dieticians saying? She started the diet at Hopkins, but we have not > been back for a couple of years now so I'm not up to date. I also > wondered about the " net carbs " that Atkins talks about -- can we > apply that at all? We have been extremely careful with her diet and > I think that is why it has been so successful. So, I am very > reluctant to try something new. However, it looks like she may be > on the diet for a long time and it would be nice to make it more > interesting. Thanks for your help. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 16, 2004 Report Share Posted November 16, 2004 Hi .... welcome! How good to hear that the diet has worked well for your daughter for all these years. She's a trooper to stay on it as long as she has (and so are YOU). One of my best friends named also has a daughter (her third child) named spelled with an " e " too. Her is 21. Like just about everything else with seizures and the keto diet, what works well for some may not work at all for others. It's such an individual thing. We were not allowed to use powdered Splenda or any sugar alcohols for the first six months. We were allowed to use diet soda made with Splenda because liquid splenda added to foods has zero carbs. It is not available to the public in that form, though--only to food manufacturers who add it to their products ( We used aspartame without any problems (but this is a seizure trigger for some kids, too)as well as stevia. After 6 months on the diet (seizure free) my daughter was allowed to try 1 piece of Extra sugar free gum twice a week. That was her big treat! Once that worked, we could use a small amount of powdered splenda or splenda packets. Now we can use as much as we want. We have had no problems. Our dietician did a lot of research on Splenda with regard to its appropriateness for keto and eventually found nothing to keep her from allowing it. She still doesn't allow it at first, but if kids are doing well, they get to try it sooner than we did. She told me she has had a " few " patients who didn't do well with it, but overall it has worked well in her recent experience. If you were followed at Hopkins previously, you might call and ask the dietician what she thinks. My thought is that the only to really know if it will be o.k. for is to try it. Every " body " is so different in how it reacts to different things. If you do decide to try, I would use just a little at first. Maybe try the diet sodas first (Hansen's natural (our fav) and Diet Rite are sweetened with it) because it has no carbs. The powdered splenda that measures like sugar has 0.5g of carb per teaspoon. The packets have 1.0g of carb per packet which is equal to the sweetness of 2 teaspoons of sugar. So, carb-wise, they are essentially the same. The carb is from a v. small amount of dextrose and the rest is maltodextrin. When we were on strict keto, we could not do " net carbs " . Now we are allowed to subtract out dietary fiber and sugar alcohols but we have a different formula to use, so our " net carbs " usually come out higher than what is on the package by a gram or two. We are in the process of weaning slowly off the diet now, though, so we are not the " norm " . I don't know for sure, but I doubt our dietician allows kids on full keto to calculate " net carbs " . There are a LOT of foods out there now that could fit into keto IF the sweeteners aren't a problem. It would be great to have more variety, but you also want to maintain the seizure control she has now. I really think you are the only one who can make the call whether it would be worth it to experiment a bit. Good luck... and again, welcome to the group. Cammie Mom to , age 8, seizure free 15 months on keto, currently weaning slowly. > > Hi, My name is . I'm new to the group. My daughter, , > is 22. She has been on the diet since 1996. The diet works well > and we have made a lot of progress, but we can't get her completely > off the benzodiazapenes she has been on for most of her life. My > question is -- many new products have come out with all the " low- > carb " craze -- do you all use Splenda products? What are the > dieticians saying? She started the diet at Hopkins, but we have not > been back for a couple of years now so I'm not up to date. I also > wondered about the " net carbs " that Atkins talks about -- can we > apply that at all? We have been extremely careful with her diet and > I think that is why it has been so successful. So, I am very > reluctant to try something new. However, it looks like she may be > on the diet for a long time and it would be nice to make it more > interesting. Thanks for your help. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 16, 2004 Report Share Posted November 16, 2004 Hi .... welcome! How good to hear that the diet has worked well for your daughter for all these years. She's a trooper to stay on it as long as she has (and so are YOU). One of my best friends named also has a daughter (her third child) named spelled with an " e " too. Her is 21. Like just about everything else with seizures and the keto diet, what works well for some may not work at all for others. It's such an individual thing. We were not allowed to use powdered Splenda or any sugar alcohols for the first six months. We were allowed to use diet soda made with Splenda because liquid splenda added to foods has zero carbs. It is not available to the public in that form, though--only to food manufacturers who add it to their products ( We used aspartame without any problems (but this is a seizure trigger for some kids, too)as well as stevia. After 6 months on the diet (seizure free) my daughter was allowed to try 1 piece of Extra sugar free gum twice a week. That was her big treat! Once that worked, we could use a small amount of powdered splenda or splenda packets. Now we can use as much as we want. We have had no problems. Our dietician did a lot of research on Splenda with regard to its appropriateness for keto and eventually found nothing to keep her from allowing it. She still doesn't allow it at first, but if kids are doing well, they get to try it sooner than we did. She told me she has had a " few " patients who didn't do well with it, but overall it has worked well in her recent experience. If you were followed at Hopkins previously, you might call and ask the dietician what she thinks. My thought is that the only to really know if it will be o.k. for is to try it. Every " body " is so different in how it reacts to different things. If you do decide to try, I would use just a little at first. Maybe try the diet sodas first (Hansen's natural (our fav) and Diet Rite are sweetened with it) because it has no carbs. The powdered splenda that measures like sugar has 0.5g of carb per teaspoon. The packets have 1.0g of carb per packet which is equal to the sweetness of 2 teaspoons of sugar. So, carb-wise, they are essentially the same. The carb is from a v. small amount of dextrose and the rest is maltodextrin. When we were on strict keto, we could not do " net carbs " . Now we are allowed to subtract out dietary fiber and sugar alcohols but we have a different formula to use, so our " net carbs " usually come out higher than what is on the package by a gram or two. We are in the process of weaning slowly off the diet now, though, so we are not the " norm " . I don't know for sure, but I doubt our dietician allows kids on full keto to calculate " net carbs " . There are a LOT of foods out there now that could fit into keto IF the sweeteners aren't a problem. It would be great to have more variety, but you also want to maintain the seizure control she has now. I really think you are the only one who can make the call whether it would be worth it to experiment a bit. Good luck... and again, welcome to the group. Cammie Mom to , age 8, seizure free 15 months on keto, currently weaning slowly. > > Hi, My name is . I'm new to the group. My daughter, , > is 22. She has been on the diet since 1996. The diet works well > and we have made a lot of progress, but we can't get her completely > off the benzodiazapenes she has been on for most of her life. My > question is -- many new products have come out with all the " low- > carb " craze -- do you all use Splenda products? What are the > dieticians saying? She started the diet at Hopkins, but we have not > been back for a couple of years now so I'm not up to date. I also > wondered about the " net carbs " that Atkins talks about -- can we > apply that at all? We have been extremely careful with her diet and > I think that is why it has been so successful. So, I am very > reluctant to try something new. However, it looks like she may be > on the diet for a long time and it would be nice to make it more > interesting. Thanks for your help. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 18, 2004 Report Share Posted November 18, 2004 Thanks to everyone for your kind welcome and for responding to my questions about Splenda. Your info is very helpful. We have had company for a couple of days and I have not been able to get back to the group. It sounds like the suggestions are similar to when we began the diet in '96. Hopkins told us we could use saccharine tablets, liquid Sweet-10. Aspartame was okay only in sodas and jello and such. However, we were told not to use the powdered aspartame because it does have carbohydrate in it. does drink diet, caffeine- free Dr. Peppers. She has had trouble with kidney stones and the urologist said it is okay as long as she is getting plenty to drink. Her hydration does not effect her seizure control, so we are very lax with the DP's. I know water would be a much better choice, but I figure it is the only thing she has any choice about, so she drinks as many as she likes. It has been 4 years since the kidney stones and they have not reappeared, so I hope it is the right choice. I am hoping to try the Hansen's drinks. They don't have any artificial color or as much carbonation. It is so encouraging to hear about all your children that are being helped by the diet. To those of you who are having a tough time -- hang in there and tweek, tweek, tweek -- it took 6 months before our had a seizure free month. Actually, it was when the grocery stores in our area discontinued a chocolate-flavored diet drink she loved (which Hopkins had approved) that she became seizure free. So, you can see why I am hesitant to try new things. If it ain't broke.... Thanks again for your suggestions. I hope I can be of help too. Thanks, Mom to , 22, on the diet since 1996, seizure free except in times of illness and withdrawal. > > > > Hi, My name is . I'm new to the group. My daughter, , > > is 22. She has been on the diet since 1996. The diet works well > > and we have made a lot of progress, but we can't get her completely > > off the benzodiazapenes she has been on for most of her life. My > > question is -- many new products have come out with all the " low- > > carb " craze -- do you all use Splenda products? What are the > > dieticians saying? She started the diet at Hopkins, but we have > not > > been back for a couple of years now so I'm not up to date. I also > > wondered about the " net carbs " that Atkins talks about -- can we > > apply that at all? We have been extremely careful with her diet > and > > I think that is why it has been so successful. So, I am very > > reluctant to try something new. However, it looks like she may be > > on the diet for a long time and it would be nice to make it more > > interesting. Thanks for your help. Quote Link to comment Share on other sites More sharing options...
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