Guest guest Posted February 11, 2004 Report Share Posted February 11, 2004 3.5:1 jumped into my mind too, but I wonder if you would be better to slowly wean all the drugs, then try to find the right ratio? Then again, perhaps putting her up to 3.5:1 would help you through the wean.....geuss I'm not much help. Thats what happens when I think out loud penny wrote: > Hello Everyone,, > > Fianlly have some time to sit and write some thoughts today, > > When we first went on the diet for ALexis, we started at the 4:1 > ratio,, by day three all she did was sleep, and the bm diapers were > horrible,,, finally on day 6 we switched to the 3:1 ratio.... since > then she is doing much less sleeping but seizures have also > returned..... at 3:1 her ketones run up and down, some we get in the > 40's and then others in the 80+ her glucose has been a puzzle to > me, at the hopital she ran low 50 60 70, since we have been home > they have been high 70 80 90 and a few in the 100's..... > > bms,,, have gotten alittle better at the 3:1 ratio instead of > several a day we now only have one but it is hugh! > > > her awake time is much better since the 3:1, but htne again she has > a seizure and needs short power naps afterwards,, but ...........at > 4:1 raatio ... we had no seizures and a child sleeping 20 out of 24 > hours............hmmmmmmmmmmmm > > Her meds have gone down we began at a half tab at night .05 of > clozepam, that is now gone,, and we have gone down from 8 ml to 6ml > BID of her trilptal.............. > > I am thinking we are not there yet,,,,, maybe the 3:5:1 ratio would > be the middle ground? > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 11, 2004 Report Share Posted February 11, 2004 Penny, You are proving that the diet can work even for children who are on g-tubes. Going to 3:1 was a wise thing. Glad to see that things are settling down. Now you have the weeks and months of fine-tuning ahead of you. Watch weight and height closely as calories have to be adjusted. Often calories are set a bit too high. The weight will tell you. From what you are saying, things are still settling down, so you will have to be patient. Usually, two weeks between changes is best, unless something is very obvious or seriously wrong. You are reducing meds. That may help with the diet. It also makes for possible upsets. Again, slow change is best. A lot is going on. You are on about 1400 calories a day, if I calculate correctly. Your child is tube-fed and very inactive. Don't tell anybody I said this, but I think that's perhaps high. That's one thing you should consider adjusting. Is your child skinny? As far as eating by mouth, I can only think of a teaspoon or so of unsweetened applesause. You would have to calculate it in to the diet. I am sure the smiles will come soon. Bill penny wrote: > Hello Everyone,, > > Fianlly have some time to sit and write some thoughts today, > > When we first went on the diet for ALexis, we started at the 4:1 > ratio,, by day three all she did was sleep, and the bm diapers were > horrible,,, finally on day 6 we switched to the 3:1 ratio.... since > then she is doing much less sleeping but seizures have also > returned..... at 3:1 her ketones run up and down, some we get in the > 40's and then others in the 80+ her glucose has been a puzzle to > me, at the hopital she ran low 50 60 70, since we have been home > they have been high 70 80 90 and a few in the 100's..... > > bms,,, have gotten alittle better at the 3:1 ratio instead of > several a day we now only have one but it is hugh! > > > her awake time is much better since the 3:1, but htne again she has > a seizure and needs short power naps afterwards,, but ...........at > 4:1 raatio ... we had no seizures and a child sleeping 20 out of 24 > hours............hmmmmmmmmmmmm > > Her meds have gone down we began at a half tab at night .05 of > clozepam, that is now gone,, and we have gone down from 8 ml to 6ml > BID of her trilptal.............. > > I am thinking we are not there yet,,,,, maybe the 3:5:1 ratio would > be the middle ground? > > For us it is a tad bit easier then most, is is only tube fed the > formulla,,, so it isnt a matter of meals and recipes for us,,, I mix > up the total formula to the 1430 cc and divide that into the 7 bolus > feeds a day,,,, it is 600 RCF 640 water, 19.5 polcose, 1g poly vi, > 3 g calcim, and 190 microlips,,,, other then that she gets > additional water to the tune of 70 cc a day for flushes... > nothing by mouth at this point at all.. although I do hope that once > we get better control I will be able to give her a few treats along > the way and at least one drink orally,,,, but first i still have to > figure in thickner since is can have any liquids by mouth unless > they look like honey, she aspirates on thin liquids, so I am still > working on finding a thickner that is not full of carbs... > > I do hope reading this some of you will have some encourageing > advice for us... I was hoping by now we would be at least having a > smiling child in our company! > > Penny > > > > > " 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 February 11, 2004 Report Share Posted February 11, 2004 Penny, You are proving that the diet can work even for children who are on g-tubes. Going to 3:1 was a wise thing. Glad to see that things are settling down. Now you have the weeks and months of fine-tuning ahead of you. Watch weight and height closely as calories have to be adjusted. Often calories are set a bit too high. The weight will tell you. From what you are saying, things are still settling down, so you will have to be patient. Usually, two weeks between changes is best, unless something is very obvious or seriously wrong. You are reducing meds. That may help with the diet. It also makes for possible upsets. Again, slow change is best. A lot is going on. You are on about 1400 calories a day, if I calculate correctly. Your child is tube-fed and very inactive. Don't tell anybody I said this, but I think that's perhaps high. That's one thing you should consider adjusting. Is your child skinny? As far as eating by mouth, I can only think of a teaspoon or so of unsweetened applesause. You would have to calculate it in to the diet. I am sure the smiles will come soon. Bill penny wrote: > Hello Everyone,, > > Fianlly have some time to sit and write some thoughts today, > > When we first went on the diet for ALexis, we started at the 4:1 > ratio,, by day three all she did was sleep, and the bm diapers were > horrible,,, finally on day 6 we switched to the 3:1 ratio.... since > then she is doing much less sleeping but seizures have also > returned..... at 3:1 her ketones run up and down, some we get in the > 40's and then others in the 80+ her glucose has been a puzzle to > me, at the hopital she ran low 50 60 70, since we have been home > they have been high 70 80 90 and a few in the 100's..... > > bms,,, have gotten alittle better at the 3:1 ratio instead of > several a day we now only have one but it is hugh! > > > her awake time is much better since the 3:1, but htne again she has > a seizure and needs short power naps afterwards,, but ...........at > 4:1 raatio ... we had no seizures and a child sleeping 20 out of 24 > hours............hmmmmmmmmmmmm > > Her meds have gone down we began at a half tab at night .05 of > clozepam, that is now gone,, and we have gone down from 8 ml to 6ml > BID of her trilptal.............. > > I am thinking we are not there yet,,,,, maybe the 3:5:1 ratio would > be the middle ground? > > For us it is a tad bit easier then most, is is only tube fed the > formulla,,, so it isnt a matter of meals and recipes for us,,, I mix > up the total formula to the 1430 cc and divide that into the 7 bolus > feeds a day,,,, it is 600 RCF 640 water, 19.5 polcose, 1g poly vi, > 3 g calcim, and 190 microlips,,,, other then that she gets > additional water to the tune of 70 cc a day for flushes... > nothing by mouth at this point at all.. although I do hope that once > we get better control I will be able to give her a few treats along > the way and at least one drink orally,,,, but first i still have to > figure in thickner since is can have any liquids by mouth unless > they look like honey, she aspirates on thin liquids, so I am still > working on finding a thickner that is not full of carbs... > > I do hope reading this some of you will have some encourageing > advice for us... I was hoping by now we would be at least having a > smiling child in our company! > > Penny > > > > > " 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 February 11, 2004 Report Share Posted February 11, 2004 Penny, You are proving that the diet can work even for children who are on g-tubes. Going to 3:1 was a wise thing. Glad to see that things are settling down. Now you have the weeks and months of fine-tuning ahead of you. Watch weight and height closely as calories have to be adjusted. Often calories are set a bit too high. The weight will tell you. From what you are saying, things are still settling down, so you will have to be patient. Usually, two weeks between changes is best, unless something is very obvious or seriously wrong. You are reducing meds. That may help with the diet. It also makes for possible upsets. Again, slow change is best. A lot is going on. You are on about 1400 calories a day, if I calculate correctly. Your child is tube-fed and very inactive. Don't tell anybody I said this, but I think that's perhaps high. That's one thing you should consider adjusting. Is your child skinny? As far as eating by mouth, I can only think of a teaspoon or so of unsweetened applesause. You would have to calculate it in to the diet. I am sure the smiles will come soon. Bill penny wrote: > Hello Everyone,, > > Fianlly have some time to sit and write some thoughts today, > > When we first went on the diet for ALexis, we started at the 4:1 > ratio,, by day three all she did was sleep, and the bm diapers were > horrible,,, finally on day 6 we switched to the 3:1 ratio.... since > then she is doing much less sleeping but seizures have also > returned..... at 3:1 her ketones run up and down, some we get in the > 40's and then others in the 80+ her glucose has been a puzzle to > me, at the hopital she ran low 50 60 70, since we have been home > they have been high 70 80 90 and a few in the 100's..... > > bms,,, have gotten alittle better at the 3:1 ratio instead of > several a day we now only have one but it is hugh! > > > her awake time is much better since the 3:1, but htne again she has > a seizure and needs short power naps afterwards,, but ...........at > 4:1 raatio ... we had no seizures and a child sleeping 20 out of 24 > hours............hmmmmmmmmmmmm > > Her meds have gone down we began at a half tab at night .05 of > clozepam, that is now gone,, and we have gone down from 8 ml to 6ml > BID of her trilptal.............. > > I am thinking we are not there yet,,,,, maybe the 3:5:1 ratio would > be the middle ground? > > For us it is a tad bit easier then most, is is only tube fed the > formulla,,, so it isnt a matter of meals and recipes for us,,, I mix > up the total formula to the 1430 cc and divide that into the 7 bolus > feeds a day,,,, it is 600 RCF 640 water, 19.5 polcose, 1g poly vi, > 3 g calcim, and 190 microlips,,,, other then that she gets > additional water to the tune of 70 cc a day for flushes... > nothing by mouth at this point at all.. although I do hope that once > we get better control I will be able to give her a few treats along > the way and at least one drink orally,,,, but first i still have to > figure in thickner since is can have any liquids by mouth unless > they look like honey, she aspirates on thin liquids, so I am still > working on finding a thickner that is not full of carbs... > > I do hope reading this some of you will have some encourageing > advice for us... I was hoping by now we would be at least having a > smiling child in our company! > > Penny > > > > > " 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 February 11, 2004 Report Share Posted February 11, 2004 > > Hello Everyone,, > > > > Fianlly have some time to sit and write some thoughts today, > > > > When we first went on the diet for ALexis, we started at the 4:1 > > ratio,, by day three all she did was sleep, and the bm diapers were > > horrible,,, finally on day 6 we switched to the 3:1 ratio.... since > > then she is doing much less sleeping but seizures have also > > returned..... at 3:1 her ketones run up and down, some we get in the > > 40's and then others in the 80+ her glucose has been a puzzle to > > me, at the hopital she ran low 50 60 70, since we have been home > > they have been high 70 80 90 and a few in the 100's..... > > > > bms,,, have gotten alittle better at the 3:1 ratio instead of > > several a day we now only have one but it is hugh! > > > > > > her awake time is much better since the 3:1, but htne again she has > > a seizure and needs short power naps afterwards,, but ...........at > > 4:1 raatio ... we had no seizures and a child sleeping 20 out of 24 > > hours............hmmmmmmmmmmmm > > > > Her meds have gone down we began at a half tab at night .05 of > > clozepam, that is now gone,, and we have gone down from 8 ml to 6ml > > BID of her trilptal.............. > > > > I am thinking we are not there yet,,,,, maybe the 3:5:1 ratio would > > be the middle ground? > > > > For us it is a tad bit easier then most, is is only tube fed the > > formulla,,, so it isnt a matter of meals and recipes for us,,, I mix > > up the total formula to the 1430 cc and divide that into the 7 bolus > > feeds a day,,,, it is 600 RCF 640 water, 19.5 polcose, 1g poly vi, > > 3 g calcim, and 190 microlips,,,, other then that she gets > > additional water to the tune of 70 cc a day for flushes... > > nothing by mouth at this point at all.. although I do hope that once > > we get better control I will be able to give her a few treats along > > the way and at least one drink orally,,,, but first i still have to > > figure in thickner since is can have any liquids by mouth unless > > they look like honey, she aspirates on thin liquids, so I am still > > working on finding a thickner that is not full of carbs... > > > > I do hope reading this some of you will have some encourageing > > advice for us... I was hoping by now we would be at least having a > > smiling child in our company! > > > > Penny > > > > > > > > > > " 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...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.