Guest guest Posted March 3, 2004 Report Share Posted March 3, 2004 Hi Rose-Marie, Thank you for jumping in! I need all the info I can get. We are leaving in a few hours to talk with the keto team, and I need to have my thoughts and questions in order. The info I have received here is great! I completely understand what you are saying about trying the diet. Lynds is almost 20 (in just a few days!) and we have not found anyone who would try this with her until now. We have a failed meds list that goes on forever. Making one choice for her can complicate other issues, but you have to make the best choice with the circumstances that you are dealing with. I agree it is worth a chance. Can't be any worse than trying another med, or re- trying one. Lynds has some G-I issues also. Terrible reflux as a child, which led way to our J-tube. That solved the problem then and has been wonderful, however don't know how the keto diet will be affected by that. Also, have some issues with digestion ect. but what do you do? Will see this afternoon. Unfortunately, the docs, nurses and dieticians don't usually know first hand the emotional and physical pain that goes along with watching your child seize continually! Sometimes things need to be tried even if not under the best circumstances. We owe our kids the chance to be as seizure free as possible for as long as possible. Your letter was inspiring. I admire you for trying the diet and hope that this new formula that you heard about may help. Sorry it has been a hard month and probably longer. We would do just about anything for our kids - right! Good luck, and I should be back on with news this evening. Hang in there! Marsha - mom to Lynds > Marsha, > > Sorry for jumping in here, but it sounds like you are looking for answers. I hope I can help. > > First, I must agree with Bill...the risk of anyone deciding to stay home with their wonderful newborn is just too great to make your daughter wait. It's EASY to recalculate the diet for tube feeding, and if a fill-in dietician can't do that, well... There are other factors besides just the formula ingredients, though, and someone on the keto team needs to be able to walk you through those. Our keto nurse has helped, although it was really our dietician who did the sleuthing for carb contents of non-food items (meds, o-t-c meds for colds and such, toothpaste, toiletries...). The group here is also an excellent resource for these questions. A very fair request would be to ask to have the current dietician write up the initial plan--she's not leaving till April, right? It shouldn't take her a whole month, honest. > > We tube-feed my daughter. She's had her g-tube for 5 years and has been on the diet over two. The diet has done marvelous good for her and has been a real godsend. I'm very happy we tried it. We are seeing less sz control now than the first year, but g-i issues are causing us to bail on it. Two prominent docs (one specializing in her syndrome, the other in pain management), along with our g-i team, have suggested the high fat content is incompatible with her digestive issues. The handwriting for intolerance was on the wall before she ever started the diet, but we chose to give it a try anyway. I guess that is something that parents of kids with any g-i issues should be aware of as they weigh trying the diet. We have tweaked her formula in several ways with no benefit, although another mom just told me about a casein-based keto formula (ProViMin) that we've never tried. > > I hope I don't sound too gloomy. We've been through an extra-hard month, and it's a little hard to brag up the good side of the diet. But it's there! We enjoyed a year of wonderful seizure control and were able to wean off all my daughter's MEGA-meds (including the Lamictal and Keppra that your daughter currently takes). I wish you the very best! > > Rose-Marie, > mom to (8 year old) > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 3, 2004 Report Share Posted March 3, 2004 Hi Rose-Marie, Thank you for jumping in! I need all the info I can get. We are leaving in a few hours to talk with the keto team, and I need to have my thoughts and questions in order. The info I have received here is great! I completely understand what you are saying about trying the diet. Lynds is almost 20 (in just a few days!) and we have not found anyone who would try this with her until now. We have a failed meds list that goes on forever. Making one choice for her can complicate other issues, but you have to make the best choice with the circumstances that you are dealing with. I agree it is worth a chance. Can't be any worse than trying another med, or re- trying one. Lynds has some G-I issues also. Terrible reflux as a child, which led way to our J-tube. That solved the problem then and has been wonderful, however don't know how the keto diet will be affected by that. Also, have some issues with digestion ect. but what do you do? Will see this afternoon. Unfortunately, the docs, nurses and dieticians don't usually know first hand the emotional and physical pain that goes along with watching your child seize continually! Sometimes things need to be tried even if not under the best circumstances. We owe our kids the chance to be as seizure free as possible for as long as possible. Your letter was inspiring. I admire you for trying the diet and hope that this new formula that you heard about may help. Sorry it has been a hard month and probably longer. We would do just about anything for our kids - right! Good luck, and I should be back on with news this evening. Hang in there! Marsha - mom to Lynds > Marsha, > > Sorry for jumping in here, but it sounds like you are looking for answers. I hope I can help. > > First, I must agree with Bill...the risk of anyone deciding to stay home with their wonderful newborn is just too great to make your daughter wait. It's EASY to recalculate the diet for tube feeding, and if a fill-in dietician can't do that, well... There are other factors besides just the formula ingredients, though, and someone on the keto team needs to be able to walk you through those. Our keto nurse has helped, although it was really our dietician who did the sleuthing for carb contents of non-food items (meds, o-t-c meds for colds and such, toothpaste, toiletries...). The group here is also an excellent resource for these questions. A very fair request would be to ask to have the current dietician write up the initial plan--she's not leaving till April, right? It shouldn't take her a whole month, honest. > > We tube-feed my daughter. She's had her g-tube for 5 years and has been on the diet over two. The diet has done marvelous good for her and has been a real godsend. I'm very happy we tried it. We are seeing less sz control now than the first year, but g-i issues are causing us to bail on it. Two prominent docs (one specializing in her syndrome, the other in pain management), along with our g-i team, have suggested the high fat content is incompatible with her digestive issues. The handwriting for intolerance was on the wall before she ever started the diet, but we chose to give it a try anyway. I guess that is something that parents of kids with any g-i issues should be aware of as they weigh trying the diet. We have tweaked her formula in several ways with no benefit, although another mom just told me about a casein-based keto formula (ProViMin) that we've never tried. > > I hope I don't sound too gloomy. We've been through an extra-hard month, and it's a little hard to brag up the good side of the diet. But it's there! We enjoyed a year of wonderful seizure control and were able to wean off all my daughter's MEGA-meds (including the Lamictal and Keppra that your daughter currently takes). I wish you the very best! > > Rose-Marie, > mom to (8 year old) > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 3, 2004 Report Share Posted March 3, 2004 Hi Rose-Marie, Thank you for jumping in! I need all the info I can get. We are leaving in a few hours to talk with the keto team, and I need to have my thoughts and questions in order. The info I have received here is great! I completely understand what you are saying about trying the diet. Lynds is almost 20 (in just a few days!) and we have not found anyone who would try this with her until now. We have a failed meds list that goes on forever. Making one choice for her can complicate other issues, but you have to make the best choice with the circumstances that you are dealing with. I agree it is worth a chance. Can't be any worse than trying another med, or re- trying one. Lynds has some G-I issues also. Terrible reflux as a child, which led way to our J-tube. That solved the problem then and has been wonderful, however don't know how the keto diet will be affected by that. Also, have some issues with digestion ect. but what do you do? Will see this afternoon. Unfortunately, the docs, nurses and dieticians don't usually know first hand the emotional and physical pain that goes along with watching your child seize continually! Sometimes things need to be tried even if not under the best circumstances. We owe our kids the chance to be as seizure free as possible for as long as possible. Your letter was inspiring. I admire you for trying the diet and hope that this new formula that you heard about may help. Sorry it has been a hard month and probably longer. We would do just about anything for our kids - right! Good luck, and I should be back on with news this evening. Hang in there! Marsha - mom to Lynds > Marsha, > > Sorry for jumping in here, but it sounds like you are looking for answers. I hope I can help. > > First, I must agree with Bill...the risk of anyone deciding to stay home with their wonderful newborn is just too great to make your daughter wait. It's EASY to recalculate the diet for tube feeding, and if a fill-in dietician can't do that, well... There are other factors besides just the formula ingredients, though, and someone on the keto team needs to be able to walk you through those. Our keto nurse has helped, although it was really our dietician who did the sleuthing for carb contents of non-food items (meds, o-t-c meds for colds and such, toothpaste, toiletries...). The group here is also an excellent resource for these questions. A very fair request would be to ask to have the current dietician write up the initial plan--she's not leaving till April, right? It shouldn't take her a whole month, honest. > > We tube-feed my daughter. She's had her g-tube for 5 years and has been on the diet over two. The diet has done marvelous good for her and has been a real godsend. I'm very happy we tried it. We are seeing less sz control now than the first year, but g-i issues are causing us to bail on it. Two prominent docs (one specializing in her syndrome, the other in pain management), along with our g-i team, have suggested the high fat content is incompatible with her digestive issues. The handwriting for intolerance was on the wall before she ever started the diet, but we chose to give it a try anyway. I guess that is something that parents of kids with any g-i issues should be aware of as they weigh trying the diet. We have tweaked her formula in several ways with no benefit, although another mom just told me about a casein-based keto formula (ProViMin) that we've never tried. > > I hope I don't sound too gloomy. We've been through an extra-hard month, and it's a little hard to brag up the good side of the diet. But it's there! We enjoyed a year of wonderful seizure control and were able to wean off all my daughter's MEGA-meds (including the Lamictal and Keppra that your daughter currently takes). I wish you the very best! > > Rose-Marie, > mom to (8 year old) > > > Quote Link to comment Share on other sites More sharing options...
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