Guest guest Posted April 3, 2004 Report Share Posted April 3, 2004 Hi , I had a bunch of stuff that Hill sent me. I saved it forever, even sent it on to a couple of people. However, since my computer crashed I can't get to it. I can tell you what we did on glucose testing, right or wrong, and I can tell you what I remember about the info sent. Hopefully some others will jump in... ** ideal ranges vary from center to center, but in general 40- 80...depending on your child and what they tolerate 40 is too low for some kids, some have seizures at 80, but others don't. I think the general consensus is 50-60 is a fairly good target range??? (we found with Macie that hers were very insconsistent, but we could rarely get them below 70's). ***testing times: right before a meal, and about 90 minutes after if I remember correctly. If they are high right before a meal, it COULD mean that not enough calories are causing muscle tissue to be burned, and glucose is produced as a result. High after a meal COULD mean too many calories or too low ratio. I asked Kathy once about blood ketone testing AFTER meals, and she said to give it at least 2 hours, so I'm not sure if she thinks that would apply to glucose as well (the 90 minute time frame didn't come from her) Hope this helps. There are lots on here much more knowledgable about this and more experienced with it than I, hopefully you'll hear from them, too. Sending good thoughts....let your mom take care of YOU while she's there!!! Glenna -- In ketogenic , " Tucker " <tuckerwing@m...> wrote: > I have tried to dig in the archives but I can't seem to find what I am looking for. Maybe it is the lack of sleep from Langan's TERRIBLE night.... Anyway.... > > We have the Precision Xtra machine and have been using it for BHB readings. I also have glucose test strips, which the dietician ordered for us, but I have not gotten instructions on when to test glucose and what is an appropriate reading, etc. Can anyone help me? I can ask them on Monday but I am hoping to do some investigating on this this weekend. If nothing else, maybe it'll take my mind off of the fact that Langan is going through hell with this last bit of lamictal wean. > > Sooooo, can anyone tell me when I should do blood glucose testing and what readings I should be looking for? > > Thanks!! > > , mom to Langan, 20 months old and keto kid since 11/03 but with new (great) keto center since 3/9/04; not yet seizure free but will be med free as soon as the lamictal clears the system!! Took the last dose last night and mom is terrified!! > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 3, 2004 Report Share Posted April 3, 2004 Hi , I had a bunch of stuff that Hill sent me. I saved it forever, even sent it on to a couple of people. However, since my computer crashed I can't get to it. I can tell you what we did on glucose testing, right or wrong, and I can tell you what I remember about the info sent. Hopefully some others will jump in... ** ideal ranges vary from center to center, but in general 40- 80...depending on your child and what they tolerate 40 is too low for some kids, some have seizures at 80, but others don't. I think the general consensus is 50-60 is a fairly good target range??? (we found with Macie that hers were very insconsistent, but we could rarely get them below 70's). ***testing times: right before a meal, and about 90 minutes after if I remember correctly. If they are high right before a meal, it COULD mean that not enough calories are causing muscle tissue to be burned, and glucose is produced as a result. High after a meal COULD mean too many calories or too low ratio. I asked Kathy once about blood ketone testing AFTER meals, and she said to give it at least 2 hours, so I'm not sure if she thinks that would apply to glucose as well (the 90 minute time frame didn't come from her) Hope this helps. There are lots on here much more knowledgable about this and more experienced with it than I, hopefully you'll hear from them, too. Sending good thoughts....let your mom take care of YOU while she's there!!! Glenna -- In ketogenic , " Tucker " <tuckerwing@m...> wrote: > I have tried to dig in the archives but I can't seem to find what I am looking for. Maybe it is the lack of sleep from Langan's TERRIBLE night.... Anyway.... > > We have the Precision Xtra machine and have been using it for BHB readings. I also have glucose test strips, which the dietician ordered for us, but I have not gotten instructions on when to test glucose and what is an appropriate reading, etc. Can anyone help me? I can ask them on Monday but I am hoping to do some investigating on this this weekend. If nothing else, maybe it'll take my mind off of the fact that Langan is going through hell with this last bit of lamictal wean. > > Sooooo, can anyone tell me when I should do blood glucose testing and what readings I should be looking for? > > Thanks!! > > , mom to Langan, 20 months old and keto kid since 11/03 but with new (great) keto center since 3/9/04; not yet seizure free but will be med free as soon as the lamictal clears the system!! Took the last dose last night and mom is terrified!! > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 3, 2004 Report Share Posted April 3, 2004 Hi , I had a bunch of stuff that Hill sent me. I saved it forever, even sent it on to a couple of people. However, since my computer crashed I can't get to it. I can tell you what we did on glucose testing, right or wrong, and I can tell you what I remember about the info sent. Hopefully some others will jump in... ** ideal ranges vary from center to center, but in general 40- 80...depending on your child and what they tolerate 40 is too low for some kids, some have seizures at 80, but others don't. I think the general consensus is 50-60 is a fairly good target range??? (we found with Macie that hers were very insconsistent, but we could rarely get them below 70's). ***testing times: right before a meal, and about 90 minutes after if I remember correctly. If they are high right before a meal, it COULD mean that not enough calories are causing muscle tissue to be burned, and glucose is produced as a result. High after a meal COULD mean too many calories or too low ratio. I asked Kathy once about blood ketone testing AFTER meals, and she said to give it at least 2 hours, so I'm not sure if she thinks that would apply to glucose as well (the 90 minute time frame didn't come from her) Hope this helps. There are lots on here much more knowledgable about this and more experienced with it than I, hopefully you'll hear from them, too. Sending good thoughts....let your mom take care of YOU while she's there!!! Glenna -- In ketogenic , " Tucker " <tuckerwing@m...> wrote: > I have tried to dig in the archives but I can't seem to find what I am looking for. Maybe it is the lack of sleep from Langan's TERRIBLE night.... Anyway.... > > We have the Precision Xtra machine and have been using it for BHB readings. I also have glucose test strips, which the dietician ordered for us, but I have not gotten instructions on when to test glucose and what is an appropriate reading, etc. Can anyone help me? I can ask them on Monday but I am hoping to do some investigating on this this weekend. If nothing else, maybe it'll take my mind off of the fact that Langan is going through hell with this last bit of lamictal wean. > > Sooooo, can anyone tell me when I should do blood glucose testing and what readings I should be looking for? > > Thanks!! > > , mom to Langan, 20 months old and keto kid since 11/03 but with new (great) keto center since 3/9/04; not yet seizure free but will be med free as soon as the lamictal clears the system!! Took the last dose last night and mom is terrified!! > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 3, 2004 Report Share Posted April 3, 2004 Thanks, Glenna. That helped tons. I checked Langan's glucose right before her 11:30 meal (4 hours after her last meal) and it was 75. Isn't that high??? About an hour earlier she smelled so strongly of ketones but that has now passed. I guess I'll check at 90 minutes after her meal and see what it is. I hate to keep sticking her, but I want to try to figure out if there is some pattern here. Shouldn't they be lower than 75 right before she eats? This is so confusing- my brain is all twisted trying to figure this out!! Thanks again! Hugs to the girls! Re: Glucose testing Hi , I had a bunch of stuff that Hill sent me. I saved it forever, even sent it on to a couple of people. However, since my computer crashed I can't get to it. I can tell you what we did on glucose testing, right or wrong, and I can tell you what I remember about the info sent. Hopefully some others will jump in... ** ideal ranges vary from center to center, but in general 40- 80...depending on your child and what they tolerate 40 is too low for some kids, some have seizures at 80, but others don't. I think the general consensus is 50-60 is a fairly good target range??? (we found with Macie that hers were very insconsistent, but we could rarely get them below 70's). ***testing times: right before a meal, and about 90 minutes after if I remember correctly. If they are high right before a meal, it COULD mean that not enough calories are causing muscle tissue to be burned, and glucose is produced as a result. High after a meal COULD mean too many calories or too low ratio. I asked Kathy once about blood ketone testing AFTER meals, and she said to give it at least 2 hours, so I'm not sure if she thinks that would apply to glucose as well (the 90 minute time frame didn't come from her) Hope this helps. There are lots on here much more knowledgable about this and more experienced with it than I, hopefully you'll hear from them, too. Sending good thoughts....let your mom take care of YOU while she's there!!! Glenna -- In ketogenic , " Tucker " <tuckerwing@m...> wrote: > I have tried to dig in the archives but I can't seem to find what I am looking for. Maybe it is the lack of sleep from Langan's TERRIBLE night.... Anyway.... > > We have the Precision Xtra machine and have been using it for BHB readings. I also have glucose test strips, which the dietician ordered for us, but I have not gotten instructions on when to test glucose and what is an appropriate reading, etc. Can anyone help me? I can ask them on Monday but I am hoping to do some investigating on this this weekend. If nothing else, maybe it'll take my mind off of the fact that Langan is going through hell with this last bit of lamictal wean. > > Sooooo, can anyone tell me when I should do blood glucose testing and what readings I should be looking for? > > Thanks!! > > , mom to Langan, 20 months old and keto kid since 11/03 but with new (great) keto center since 3/9/04; not yet seizure free but will be med free as soon as the lamictal clears the system!! Took the last dose last night and mom is terrified!! > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 3, 2004 Report Share Posted April 3, 2004 Thanks, Glenna. That helped tons. I checked Langan's glucose right before her 11:30 meal (4 hours after her last meal) and it was 75. Isn't that high??? About an hour earlier she smelled so strongly of ketones but that has now passed. I guess I'll check at 90 minutes after her meal and see what it is. I hate to keep sticking her, but I want to try to figure out if there is some pattern here. Shouldn't they be lower than 75 right before she eats? This is so confusing- my brain is all twisted trying to figure this out!! Thanks again! Hugs to the girls! Re: Glucose testing Hi , I had a bunch of stuff that Hill sent me. I saved it forever, even sent it on to a couple of people. However, since my computer crashed I can't get to it. I can tell you what we did on glucose testing, right or wrong, and I can tell you what I remember about the info sent. Hopefully some others will jump in... ** ideal ranges vary from center to center, but in general 40- 80...depending on your child and what they tolerate 40 is too low for some kids, some have seizures at 80, but others don't. I think the general consensus is 50-60 is a fairly good target range??? (we found with Macie that hers were very insconsistent, but we could rarely get them below 70's). ***testing times: right before a meal, and about 90 minutes after if I remember correctly. If they are high right before a meal, it COULD mean that not enough calories are causing muscle tissue to be burned, and glucose is produced as a result. High after a meal COULD mean too many calories or too low ratio. I asked Kathy once about blood ketone testing AFTER meals, and she said to give it at least 2 hours, so I'm not sure if she thinks that would apply to glucose as well (the 90 minute time frame didn't come from her) Hope this helps. There are lots on here much more knowledgable about this and more experienced with it than I, hopefully you'll hear from them, too. Sending good thoughts....let your mom take care of YOU while she's there!!! Glenna -- In ketogenic , " Tucker " <tuckerwing@m...> wrote: > I have tried to dig in the archives but I can't seem to find what I am looking for. Maybe it is the lack of sleep from Langan's TERRIBLE night.... Anyway.... > > We have the Precision Xtra machine and have been using it for BHB readings. I also have glucose test strips, which the dietician ordered for us, but I have not gotten instructions on when to test glucose and what is an appropriate reading, etc. Can anyone help me? I can ask them on Monday but I am hoping to do some investigating on this this weekend. If nothing else, maybe it'll take my mind off of the fact that Langan is going through hell with this last bit of lamictal wean. > > Sooooo, can anyone tell me when I should do blood glucose testing and what readings I should be looking for? > > Thanks!! > > , mom to Langan, 20 months old and keto kid since 11/03 but with new (great) keto center since 3/9/04; not yet seizure free but will be med free as soon as the lamictal clears the system!! Took the last dose last night and mom is terrified!! > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 3, 2004 Report Share Posted April 3, 2004 Hi , Again, I'm no expert, but I think what you said about finding a pattern is the key. 70's may be a bit high, but maybe not for Langan. Seems like with Macie a common number for her was 78, sometimes with seizures and sometimes not. I'd maybe check sometime when she has the ketone smell and see what it is then to get an idea. We used to try to check when Macie was having seizures, too, but I've read some stuff from that seizures can skew glucose readings. I think just keeping good records and trying to find patterns will help. Maybe you'll be able to correlate certain meals, certain foods, certain times of day, etc. that can be related to the seizures. You'll have the extra tool of the blood ketones to help as well. In my simple mind, I always thought if ketones were high, glucose had to be low and vice versa, but we found with Macie that wasn't always the case. Finding the right numbers for Langan will be the key, and her magic numbers might look very different from someone else's. I think as with blood ketones, once you figure some things out you can back off on doing them so much. I remember Kathy telling me that when kids are doing well, sometimes they won't check blood ketones for 6 months. Wouldn't that be great? Good luck! Glenna > > I have tried to dig in the archives but I can't seem to find what I > am looking for. Maybe it is the lack of sleep from Langan's TERRIBLE > night.... Anyway.... > > > > We have the Precision Xtra machine and have been using it for BHB > readings. I also have glucose test strips, which the dietician > ordered for us, but I have not gotten instructions on when to test > glucose and what is an appropriate reading, etc. Can anyone help > me? I can ask them on Monday but I am hoping to do some > investigating on this this weekend. If nothing else, maybe it'll > take my mind off of the fact that Langan is going through hell with > this last bit of lamictal wean. > > > > Sooooo, can anyone tell me when I should do blood glucose testing > and what readings I should be looking for? > > > > Thanks!! > > > > , mom to Langan, 20 months old and keto kid since 11/03 but > with new (great) keto center since 3/9/04; not yet seizure free but > will be med free as soon as the lamictal clears the system!! Took > the last dose last night and mom is terrified!! > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 3, 2004 Report Share Posted April 3, 2004 Thanks, Glenna. I was going to check her glucose at 90 minutes after she ate but we both fell asleep so I missed it this time! At least she had a good 2 hour nap with no funny business- I'm thankful for that after yesterday and last night. Hugs to the girls! Re: Glucose testing Hi , Again, I'm no expert, but I think what you said about finding a pattern is the key. 70's may be a bit high, but maybe not for Langan. Seems like with Macie a common number for her was 78, sometimes with seizures and sometimes not. I'd maybe check sometime when she has the ketone smell and see what it is then to get an idea. We used to try to check when Macie was having seizures, too, but I've read some stuff from that seizures can skew glucose readings. I think just keeping good records and trying to find patterns will help. Maybe you'll be able to correlate certain meals, certain foods, certain times of day, etc. that can be related to the seizures. You'll have the extra tool of the blood ketones to help as well. In my simple mind, I always thought if ketones were high, glucose had to be low and vice versa, but we found with Macie that wasn't always the case. Finding the right numbers for Langan will be the key, and her magic numbers might look very different from someone else's. I think as with blood ketones, once you figure some things out you can back off on doing them so much. I remember Kathy telling me that when kids are doing well, sometimes they won't check blood ketones for 6 months. Wouldn't that be great? Good luck! Glenna > > I have tried to dig in the archives but I can't seem to find what I > am looking for. Maybe it is the lack of sleep from Langan's TERRIBLE > night.... Anyway.... > > > > We have the Precision Xtra machine and have been using it for BHB > readings. I also have glucose test strips, which the dietician > ordered for us, but I have not gotten instructions on when to test > glucose and what is an appropriate reading, etc. Can anyone help > me? I can ask them on Monday but I am hoping to do some > investigating on this this weekend. If nothing else, maybe it'll > take my mind off of the fact that Langan is going through hell with > this last bit of lamictal wean. > > > > Sooooo, can anyone tell me when I should do blood glucose testing > and what readings I should be looking for? > > > > Thanks!! > > > > , mom to Langan, 20 months old and keto kid since 11/03 but > with new (great) keto center since 3/9/04; not yet seizure free but > will be med free as soon as the lamictal clears the system!! Took > the last dose last night and mom is terrified!! > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 3, 2004 Report Share Posted April 3, 2004 Thanks, Glenna. I was going to check her glucose at 90 minutes after she ate but we both fell asleep so I missed it this time! At least she had a good 2 hour nap with no funny business- I'm thankful for that after yesterday and last night. Hugs to the girls! Re: Glucose testing Hi , Again, I'm no expert, but I think what you said about finding a pattern is the key. 70's may be a bit high, but maybe not for Langan. Seems like with Macie a common number for her was 78, sometimes with seizures and sometimes not. I'd maybe check sometime when she has the ketone smell and see what it is then to get an idea. We used to try to check when Macie was having seizures, too, but I've read some stuff from that seizures can skew glucose readings. I think just keeping good records and trying to find patterns will help. Maybe you'll be able to correlate certain meals, certain foods, certain times of day, etc. that can be related to the seizures. You'll have the extra tool of the blood ketones to help as well. In my simple mind, I always thought if ketones were high, glucose had to be low and vice versa, but we found with Macie that wasn't always the case. Finding the right numbers for Langan will be the key, and her magic numbers might look very different from someone else's. I think as with blood ketones, once you figure some things out you can back off on doing them so much. I remember Kathy telling me that when kids are doing well, sometimes they won't check blood ketones for 6 months. Wouldn't that be great? Good luck! Glenna > > I have tried to dig in the archives but I can't seem to find what I > am looking for. Maybe it is the lack of sleep from Langan's TERRIBLE > night.... Anyway.... > > > > We have the Precision Xtra machine and have been using it for BHB > readings. I also have glucose test strips, which the dietician > ordered for us, but I have not gotten instructions on when to test > glucose and what is an appropriate reading, etc. Can anyone help > me? I can ask them on Monday but I am hoping to do some > investigating on this this weekend. If nothing else, maybe it'll > take my mind off of the fact that Langan is going through hell with > this last bit of lamictal wean. > > > > Sooooo, can anyone tell me when I should do blood glucose testing > and what readings I should be looking for? > > > > Thanks!! > > > > , mom to Langan, 20 months old and keto kid since 11/03 but > with new (great) keto center since 3/9/04; not yet seizure free but > will be med free as soon as the lamictal clears the system!! Took > the last dose last night and mom is terrified!! > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 3, 2004 Report Share Posted April 3, 2004 Hi, I'm wondering if someone could explain the glucose numbers and their importance to me; also, what is the 'ketone smell'? Is it better to have low glucose numbers? has only been on the diet for 3 weeks, and although they tested his blood glucose in the hospital every 4 hours, they insisted I didn't need to have one at home. 's number went down to 41 in the hospital so I was concerned, but the dietician told me it doesn't matter what the numbers are, that we treat the symptoms not the numbers. After landing in the ER twice in two weeks, I had the pediatrician write an Rx for a glucometer. I have been testing him periodically and his numbers have been right around 99, really high! What does this mean? His ketones are always large, this morning they were almost black on the ketostick. His seizures have definitely improved, although I've seen a few new ones pop up that he never used to have. Staring ones, and one time big jerks, almost looks like a startle. We've never done blood ketones, what are they for? Thanks a lot for your help, ' Mom to , Lissencephaly, seizures, reflux, cp, keto kid since 3/9/04 Re: Glucose testing Hi , Again, I'm no expert, but I think what you said about finding a pattern is the key. 70's may be a bit high, but maybe not for Langan. Seems like with Macie a common number for her was 78, sometimes with seizures and sometimes not. I'd maybe check sometime when she has the ketone smell and see what it is then to get an idea. We used to try to check when Macie was having seizures, too, but I've read some stuff from that seizures can skew glucose readings. I think just keeping good records and trying to find patterns will help. Maybe you'll be able to correlate certain meals, certain foods, certain times of day, etc. that can be related to the seizures. You'll have the extra tool of the blood ketones to help as well. In my simple mind, I always thought if ketones were high, glucose had to be low and vice versa, but we found with Macie that wasn't always the case. Finding the right numbers for Langan will be the key, and her magic numbers might look very different from someone else's. I think as with blood ketones, once you figure some things out you can back off on doing them so much. I remember Kathy telling me that when kids are doing well, sometimes they won't check blood ketones for 6 months. Wouldn't that be great? Good luck! Glenna > > I have tried to dig in the archives but I can't seem to find what I > am looking for. Maybe it is the lack of sleep from Langan's TERRIBLE > night.... Anyway.... > > > > We have the Precision Xtra machine and have been using it for BHB > readings. I also have glucose test strips, which the dietician > ordered for us, but I have not gotten instructions on when to test > glucose and what is an appropriate reading, etc. Can anyone help > me? I can ask them on Monday but I am hoping to do some > investigating on this this weekend. If nothing else, maybe it'll > take my mind off of the fact that Langan is going through hell with > this last bit of lamictal wean. > > > > Sooooo, can anyone tell me when I should do blood glucose testing > and what readings I should be looking for? > > > > Thanks!! > > > > , mom to Langan, 20 months old and keto kid since 11/03 but > with new (great) keto center since 3/9/04; not yet seizure free but > will be med free as soon as the lamictal clears the system!! Took > the last dose last night and mom is terrified!! > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 3, 2004 Report Share Posted April 3, 2004 Hi, I'm wondering if someone could explain the glucose numbers and their importance to me; also, what is the 'ketone smell'? Is it better to have low glucose numbers? has only been on the diet for 3 weeks, and although they tested his blood glucose in the hospital every 4 hours, they insisted I didn't need to have one at home. 's number went down to 41 in the hospital so I was concerned, but the dietician told me it doesn't matter what the numbers are, that we treat the symptoms not the numbers. After landing in the ER twice in two weeks, I had the pediatrician write an Rx for a glucometer. I have been testing him periodically and his numbers have been right around 99, really high! What does this mean? His ketones are always large, this morning they were almost black on the ketostick. His seizures have definitely improved, although I've seen a few new ones pop up that he never used to have. Staring ones, and one time big jerks, almost looks like a startle. We've never done blood ketones, what are they for? Thanks a lot for your help, ' Mom to , Lissencephaly, seizures, reflux, cp, keto kid since 3/9/04 Re: Glucose testing Hi , Again, I'm no expert, but I think what you said about finding a pattern is the key. 70's may be a bit high, but maybe not for Langan. Seems like with Macie a common number for her was 78, sometimes with seizures and sometimes not. I'd maybe check sometime when she has the ketone smell and see what it is then to get an idea. We used to try to check when Macie was having seizures, too, but I've read some stuff from that seizures can skew glucose readings. I think just keeping good records and trying to find patterns will help. Maybe you'll be able to correlate certain meals, certain foods, certain times of day, etc. that can be related to the seizures. You'll have the extra tool of the blood ketones to help as well. In my simple mind, I always thought if ketones were high, glucose had to be low and vice versa, but we found with Macie that wasn't always the case. Finding the right numbers for Langan will be the key, and her magic numbers might look very different from someone else's. I think as with blood ketones, once you figure some things out you can back off on doing them so much. I remember Kathy telling me that when kids are doing well, sometimes they won't check blood ketones for 6 months. Wouldn't that be great? Good luck! Glenna > > I have tried to dig in the archives but I can't seem to find what I > am looking for. Maybe it is the lack of sleep from Langan's TERRIBLE > night.... Anyway.... > > > > We have the Precision Xtra machine and have been using it for BHB > readings. I also have glucose test strips, which the dietician > ordered for us, but I have not gotten instructions on when to test > glucose and what is an appropriate reading, etc. Can anyone help > me? I can ask them on Monday but I am hoping to do some > investigating on this this weekend. If nothing else, maybe it'll > take my mind off of the fact that Langan is going through hell with > this last bit of lamictal wean. > > > > Sooooo, can anyone tell me when I should do blood glucose testing > and what readings I should be looking for? > > > > Thanks!! > > > > , mom to Langan, 20 months old and keto kid since 11/03 but > with new (great) keto center since 3/9/04; not yet seizure free but > will be med free as soon as the lamictal clears the system!! Took > the last dose last night and mom is terrified!! > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 3, 2004 Report Share Posted April 3, 2004 Hi, I'm wondering if someone could explain the glucose numbers and their importance to me; also, what is the 'ketone smell'? Is it better to have low glucose numbers? has only been on the diet for 3 weeks, and although they tested his blood glucose in the hospital every 4 hours, they insisted I didn't need to have one at home. 's number went down to 41 in the hospital so I was concerned, but the dietician told me it doesn't matter what the numbers are, that we treat the symptoms not the numbers. After landing in the ER twice in two weeks, I had the pediatrician write an Rx for a glucometer. I have been testing him periodically and his numbers have been right around 99, really high! What does this mean? His ketones are always large, this morning they were almost black on the ketostick. His seizures have definitely improved, although I've seen a few new ones pop up that he never used to have. Staring ones, and one time big jerks, almost looks like a startle. We've never done blood ketones, what are they for? Thanks a lot for your help, ' Mom to , Lissencephaly, seizures, reflux, cp, keto kid since 3/9/04 Re: Glucose testing Hi , Again, I'm no expert, but I think what you said about finding a pattern is the key. 70's may be a bit high, but maybe not for Langan. Seems like with Macie a common number for her was 78, sometimes with seizures and sometimes not. I'd maybe check sometime when she has the ketone smell and see what it is then to get an idea. We used to try to check when Macie was having seizures, too, but I've read some stuff from that seizures can skew glucose readings. I think just keeping good records and trying to find patterns will help. Maybe you'll be able to correlate certain meals, certain foods, certain times of day, etc. that can be related to the seizures. You'll have the extra tool of the blood ketones to help as well. In my simple mind, I always thought if ketones were high, glucose had to be low and vice versa, but we found with Macie that wasn't always the case. Finding the right numbers for Langan will be the key, and her magic numbers might look very different from someone else's. I think as with blood ketones, once you figure some things out you can back off on doing them so much. I remember Kathy telling me that when kids are doing well, sometimes they won't check blood ketones for 6 months. Wouldn't that be great? Good luck! Glenna > > I have tried to dig in the archives but I can't seem to find what I > am looking for. Maybe it is the lack of sleep from Langan's TERRIBLE > night.... Anyway.... > > > > We have the Precision Xtra machine and have been using it for BHB > readings. I also have glucose test strips, which the dietician > ordered for us, but I have not gotten instructions on when to test > glucose and what is an appropriate reading, etc. Can anyone help > me? I can ask them on Monday but I am hoping to do some > investigating on this this weekend. If nothing else, maybe it'll > take my mind off of the fact that Langan is going through hell with > this last bit of lamictal wean. > > > > Sooooo, can anyone tell me when I should do blood glucose testing > and what readings I should be looking for? > > > > Thanks!! > > > > , mom to Langan, 20 months old and keto kid since 11/03 but > with new (great) keto center since 3/9/04; not yet seizure free but > will be med free as soon as the lamictal clears the system!! Took > the last dose last night and mom is terrified!! > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 4, 2004 Report Share Posted April 4, 2004 Hi, I'm wondering if someone could explain the glucose numbers and their importance to me; also, what is the 'ketone smell'? Is it better to have low glucose numbers? has only been on the diet for 3 weeks, and although they tested his blood glucose in the hospital every 4 hours, they insisted I didn't need to have one at home. 's number went down to 41 in the hospital so I was concerned, but the dietician told me it doesn't matter what the numbers are, that we treat the symptoms not the numbers. After landing in the ER twice in two weeks, I had the pediatrician write an Rx for a glucometer. I have been testing him periodically and his numbers have been right around 99, really high! What does this mean? His ketones are always large, this morning they were almost black on the ketostick. His seizures have definitely improved, although I've seen a few new ones pop up that he never used to have. Staring ones, and one time big jerks, almost looks like a startle. We've never done blood ketones, what are they for? Thanks a lot for your help, ' Mom to , Lissencephaly, seizures, reflux, cp, keto kid since 3/9/04 Re: Glucose testing Hi , Again, I'm no expert, but I think what you said about finding a pattern is the key. 70's may be a bit high, but maybe not for Langan. Seems like with Macie a common number for her was 78, sometimes with seizures and sometimes not. I'd maybe check sometime when she has the ketone smell and see what it is then to get an idea. We used to try to check when Macie was having seizures, too, but I've read some stuff from that seizures can skew glucose readings. I think just keeping good records and trying to find patterns will help. Maybe you'll be able to correlate certain meals, certain foods, certain times of day, etc. that can be related to the seizures. You'll have the extra tool of the blood ketones to help as well. In my simple mind, I always thought if ketones were high, glucose had to be low and vice versa, but we found with Macie that wasn't always the case. Finding the right numbers for Langan will be the key, and her magic numbers might look very different from someone else's. I think as with blood ketones, once you figure some things out you can back off on doing them so much. I remember Kathy telling me that when kids are doing well, sometimes they won't check blood ketones for 6 months. Wouldn't that be great? Good luck! Glenna > > I have tried to dig in the archives but I can't seem to find what I > am looking for. Maybe it is the lack of sleep from Langan's TERRIBLE > night.... Anyway.... > > > > We have the Precision Xtra machine and have been using it for BHB > readings. I also have glucose test strips, which the dietician > ordered for us, but I have not gotten instructions on when to test > glucose and what is an appropriate reading, etc. Can anyone help > me? I can ask them on Monday but I am hoping to do some > investigating on this this weekend. If nothing else, maybe it'll > take my mind off of the fact that Langan is going through hell with > this last bit of lamictal wean. > > > > Sooooo, can anyone tell me when I should do blood glucose testing > and what readings I should be looking for? > > > > Thanks!! > > > > , mom to Langan, 20 months old and keto kid since 11/03 but > with new (great) keto center since 3/9/04; not yet seizure free but > will be med free as soon as the lamictal clears the system!! Took > the last dose last night and mom is terrified!! > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 4, 2004 Report Share Posted April 4, 2004 The high glucose, when seen along with large ketones, could mean too many calories. How's his seizure control? The " ketone breath " smell is just like fingernail polish remover...... or actetone. The kids get that smell on their breath when they're really super ketotic. It's pretty distinctive. When Katera had it, I always knew she was TOO ketotic and in danger of dehyration..... because she would always start refusing to drink and have reflux symtoms along with being overly ketotic. She did better at between 80 and 160 for ketones. I'm reading backwards thru my inbox but I see another one from you so I'm off to read that one. Patti Re: Glucose testing Hi , Again, I'm no expert, but I think what you said about finding a pattern is the key. 70's may be a bit high, but maybe not for Langan. Seems like with Macie a common number for her was 78, sometimes with seizures and sometimes not. I'd maybe check sometime when she has the ketone smell and see what it is then to get an idea. We used to try to check when Macie was having seizures, too, but I've read some stuff from that seizures can skew glucose readings. I think just keeping good records and trying to find patterns will help. Maybe you'll be able to correlate certain meals, certain foods, certain times of day, etc. that can be related to the seizures. You'll have the extra tool of the blood ketones to help as well. In my simple mind, I always thought if ketones were high, glucose had to be low and vice versa, but we found with Macie that wasn't always the case. Finding the right numbers for Langan will be the key, and her magic numbers might look very different from someone else's. I think as with blood ketones, once you figure some things out you can back off on doing them so much. I remember Kathy telling me that when kids are doing well, sometimes they won't check blood ketones for 6 months. Wouldn't that be great? Good luck! Glenna > > I have tried to dig in the archives but I can't seem to find what I > am looking for. Maybe it is the lack of sleep from Langan's TERRIBLE > night.... Anyway.... > > > > We have the Precision Xtra machine and have been using it for BHB > readings. I also have glucose test strips, which the dietician > ordered for us, but I have not gotten instructions on when to test > glucose and what is an appropriate reading, etc. Can anyone help > me? I can ask them on Monday but I am hoping to do some > investigating on this this weekend. If nothing else, maybe it'll > take my mind off of the fact that Langan is going through hell with > this last bit of lamictal wean. > > > > Sooooo, can anyone tell me when I should do blood glucose testing > and what readings I should be looking for? > > > > Thanks!! > > > > , mom to Langan, 20 months old and keto kid since 11/03 but > with new (great) keto center since 3/9/04; not yet seizure free but > will be med free as soon as the lamictal clears the system!! Took > the last dose last night and mom is terrified!! > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 4, 2004 Report Share Posted April 4, 2004 I'll have a go soon at posting that glucose info I had in the files, as a couple of them were in attachment form, so can't be reposted on here. Then I'll go back through some of the glucose posts on here recently and see if the info in there will cover most of the questions, PS - Ann and co - there may be an SOS heading to your email addys if I can't do the posting in the files thing without making a muck up of it, ahem... ----- Original Message ----- > Hi , > Again, I'm no expert, but I think what you said about finding a > pattern is the key. 70's may be a bit high, but maybe not for > Langan. Seems like with Macie a common number for her was 78, > sometimes with seizures and sometimes not. I'd maybe check sometime > when she has the ketone smell and see what it is then to get an > idea. We used to try to check when Macie was having seizures, too, > but I've read some stuff from that seizures can skew glucose > readings. I think just keeping good records and trying to find > patterns will help. Maybe you'll be able to correlate certain meals, > certain foods, certain times of day, etc. that can be related to the > seizures. You'll have the extra tool of the blood ketones to help as > well. In my simple mind, I always thought if ketones were high, > glucose had to be low and vice versa, but we found with Macie that > wasn't always the case. Finding the right numbers for Langan will be > the key, and her magic numbers might look very different from someone > else's. I think as with blood ketones, once you figure some things > out you can back off on doing them so much. I remember Kathy telling > me that when kids are doing well, sometimes they won't check blood > ketones for 6 months. Wouldn't that be great? > > Good luck! > > Glenna > > > > > I have tried to dig in the archives but I can't seem to find > what I > > am looking for. Maybe it is the lack of sleep from Langan's > TERRIBLE > > night.... Anyway.... > > > > > > We have the Precision Xtra machine and have been using it for I also have glucose test strips, which the dietician > > ordered for us, but I have not gotten instructions on when to > test > > glucose and what is an appropriate reading, etc. Can anyone help > > me? I can ask them on Monday but I am hoping to do some > > investigating on this this weekend. If nothing else, maybe it'll > > take my mind off of the fact that Langan is going through hell > with > > this last bit of lamictal wean. > > > > > > Sooooo, can anyone tell me when I should do blood glucose > testing > > and what readings I should be looking for? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 4, 2004 Report Share Posted April 4, 2004 I'll have a go soon at posting that glucose info I had in the files, as a couple of them were in attachment form, so can't be reposted on here. Then I'll go back through some of the glucose posts on here recently and see if the info in there will cover most of the questions, PS - Ann and co - there may be an SOS heading to your email addys if I can't do the posting in the files thing without making a muck up of it, ahem... ----- Original Message ----- > Hi , > Again, I'm no expert, but I think what you said about finding a > pattern is the key. 70's may be a bit high, but maybe not for > Langan. Seems like with Macie a common number for her was 78, > sometimes with seizures and sometimes not. I'd maybe check sometime > when she has the ketone smell and see what it is then to get an > idea. We used to try to check when Macie was having seizures, too, > but I've read some stuff from that seizures can skew glucose > readings. I think just keeping good records and trying to find > patterns will help. Maybe you'll be able to correlate certain meals, > certain foods, certain times of day, etc. that can be related to the > seizures. You'll have the extra tool of the blood ketones to help as > well. In my simple mind, I always thought if ketones were high, > glucose had to be low and vice versa, but we found with Macie that > wasn't always the case. Finding the right numbers for Langan will be > the key, and her magic numbers might look very different from someone > else's. I think as with blood ketones, once you figure some things > out you can back off on doing them so much. I remember Kathy telling > me that when kids are doing well, sometimes they won't check blood > ketones for 6 months. Wouldn't that be great? > > Good luck! > > Glenna > > > > > I have tried to dig in the archives but I can't seem to find > what I > > am looking for. Maybe it is the lack of sleep from Langan's > TERRIBLE > > night.... Anyway.... > > > > > > We have the Precision Xtra machine and have been using it for I also have glucose test strips, which the dietician > > ordered for us, but I have not gotten instructions on when to > test > > glucose and what is an appropriate reading, etc. Can anyone help > > me? I can ask them on Monday but I am hoping to do some > > investigating on this this weekend. If nothing else, maybe it'll > > take my mind off of the fact that Langan is going through hell > with > > this last bit of lamictal wean. > > > > > > Sooooo, can anyone tell me when I should do blood glucose > testing > > and what readings I should be looking for? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 4, 2004 Report Share Posted April 4, 2004 I'll have a go soon at posting that glucose info I had in the files, as a couple of them were in attachment form, so can't be reposted on here. Then I'll go back through some of the glucose posts on here recently and see if the info in there will cover most of the questions, PS - Ann and co - there may be an SOS heading to your email addys if I can't do the posting in the files thing without making a muck up of it, ahem... ----- Original Message ----- > Hi , > Again, I'm no expert, but I think what you said about finding a > pattern is the key. 70's may be a bit high, but maybe not for > Langan. Seems like with Macie a common number for her was 78, > sometimes with seizures and sometimes not. I'd maybe check sometime > when she has the ketone smell and see what it is then to get an > idea. We used to try to check when Macie was having seizures, too, > but I've read some stuff from that seizures can skew glucose > readings. I think just keeping good records and trying to find > patterns will help. Maybe you'll be able to correlate certain meals, > certain foods, certain times of day, etc. that can be related to the > seizures. You'll have the extra tool of the blood ketones to help as > well. In my simple mind, I always thought if ketones were high, > glucose had to be low and vice versa, but we found with Macie that > wasn't always the case. Finding the right numbers for Langan will be > the key, and her magic numbers might look very different from someone > else's. I think as with blood ketones, once you figure some things > out you can back off on doing them so much. I remember Kathy telling > me that when kids are doing well, sometimes they won't check blood > ketones for 6 months. Wouldn't that be great? > > Good luck! > > Glenna > > > > > I have tried to dig in the archives but I can't seem to find > what I > > am looking for. Maybe it is the lack of sleep from Langan's > TERRIBLE > > night.... Anyway.... > > > > > > We have the Precision Xtra machine and have been using it for I also have glucose test strips, which the dietician > > ordered for us, but I have not gotten instructions on when to > test > > glucose and what is an appropriate reading, etc. Can anyone help > > me? I can ask them on Monday but I am hoping to do some > > investigating on this this weekend. If nothing else, maybe it'll > > take my mind off of the fact that Langan is going through hell > with > > this last bit of lamictal wean. > > > > > > Sooooo, can anyone tell me when I should do blood glucose > testing > > and what readings I should be looking for? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 4, 2004 Report Share Posted April 4, 2004 Thanks for your help, Patti. 's seizures are better than before the diet, although about every third day he is still having epileptic spasms upon waking in the morning. He is also having about 3 staring seizures during the day that last about 8 seconds. He's on 1000 calories a day; is 5 years old and weighs 32 pounds. As far as the reflux issue goes, you asked what ratio is on. He is on 2.7:1. He was started on 4:1 but got too ketotic; then went down to 3:1, still too ketotic, so went down again. ' Mom to 5 years old; Lissencephaly, reflux, seizures, cp, keto kid since 3-9 Re: Re: Glucose testing The high glucose, when seen along with large ketones, could mean too many calories. How's his seizure control? The " ketone breath " smell is just like fingernail polish remover...... or actetone. The kids get that smell on their breath when they're really super ketotic. It's pretty distinctive. When Katera had it, I always knew she was TOO ketotic and in danger of dehyration..... because she would always start refusing to drink and have reflux symtoms along with being overly ketotic. She did better at between 80 and 160 for ketones. I'm reading backwards thru my inbox but I see another one from you so I'm off to read that one. Patti Re: Glucose testing Hi , Again, I'm no expert, but I think what you said about finding a pattern is the key. 70's may be a bit high, but maybe not for Langan. Seems like with Macie a common number for her was 78, sometimes with seizures and sometimes not. I'd maybe check sometime when she has the ketone smell and see what it is then to get an idea. We used to try to check when Macie was having seizures, too, but I've read some stuff from that seizures can skew glucose readings. I think just keeping good records and trying to find patterns will help. Maybe you'll be able to correlate certain meals, certain foods, certain times of day, etc. that can be related to the seizures. You'll have the extra tool of the blood ketones to help as well. In my simple mind, I always thought if ketones were high, glucose had to be low and vice versa, but we found with Macie that wasn't always the case. Finding the right numbers for Langan will be the key, and her magic numbers might look very different from someone else's. I think as with blood ketones, once you figure some things out you can back off on doing them so much. I remember Kathy telling me that when kids are doing well, sometimes they won't check blood ketones for 6 months. Wouldn't that be great? Good luck! Glenna > > I have tried to dig in the archives but I can't seem to find what I > am looking for. Maybe it is the lack of sleep from Langan's TERRIBLE > night.... Anyway.... > > > > We have the Precision Xtra machine and have been using it for BHB > readings. I also have glucose test strips, which the dietician > ordered for us, but I have not gotten instructions on when to test > glucose and what is an appropriate reading, etc. Can anyone help > me? I can ask them on Monday but I am hoping to do some > investigating on this this weekend. If nothing else, maybe it'll > take my mind off of the fact that Langan is going through hell with > this last bit of lamictal wean. > > > > Sooooo, can anyone tell me when I should do blood glucose testing > and what readings I should be looking for? > > > > Thanks!! > > > > , mom to Langan, 20 months old and keto kid since 11/03 but > with new (great) keto center since 3/9/04; not yet seizure free but > will be med free as soon as the lamictal clears the system!! Took > the last dose last night and mom is terrified!! > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 4, 2004 Report Share Posted April 4, 2004 Thanks for your help, Patti. 's seizures are better than before the diet, although about every third day he is still having epileptic spasms upon waking in the morning. He is also having about 3 staring seizures during the day that last about 8 seconds. He's on 1000 calories a day; is 5 years old and weighs 32 pounds. As far as the reflux issue goes, you asked what ratio is on. He is on 2.7:1. He was started on 4:1 but got too ketotic; then went down to 3:1, still too ketotic, so went down again. ' Mom to 5 years old; Lissencephaly, reflux, seizures, cp, keto kid since 3-9 Re: Re: Glucose testing The high glucose, when seen along with large ketones, could mean too many calories. How's his seizure control? The " ketone breath " smell is just like fingernail polish remover...... or actetone. The kids get that smell on their breath when they're really super ketotic. It's pretty distinctive. When Katera had it, I always knew she was TOO ketotic and in danger of dehyration..... because she would always start refusing to drink and have reflux symtoms along with being overly ketotic. She did better at between 80 and 160 for ketones. I'm reading backwards thru my inbox but I see another one from you so I'm off to read that one. Patti Re: Glucose testing Hi , Again, I'm no expert, but I think what you said about finding a pattern is the key. 70's may be a bit high, but maybe not for Langan. Seems like with Macie a common number for her was 78, sometimes with seizures and sometimes not. I'd maybe check sometime when she has the ketone smell and see what it is then to get an idea. We used to try to check when Macie was having seizures, too, but I've read some stuff from that seizures can skew glucose readings. I think just keeping good records and trying to find patterns will help. Maybe you'll be able to correlate certain meals, certain foods, certain times of day, etc. that can be related to the seizures. You'll have the extra tool of the blood ketones to help as well. In my simple mind, I always thought if ketones were high, glucose had to be low and vice versa, but we found with Macie that wasn't always the case. Finding the right numbers for Langan will be the key, and her magic numbers might look very different from someone else's. I think as with blood ketones, once you figure some things out you can back off on doing them so much. I remember Kathy telling me that when kids are doing well, sometimes they won't check blood ketones for 6 months. Wouldn't that be great? Good luck! Glenna > > I have tried to dig in the archives but I can't seem to find what I > am looking for. Maybe it is the lack of sleep from Langan's TERRIBLE > night.... Anyway.... > > > > We have the Precision Xtra machine and have been using it for BHB > readings. I also have glucose test strips, which the dietician > ordered for us, but I have not gotten instructions on when to test > glucose and what is an appropriate reading, etc. Can anyone help > me? I can ask them on Monday but I am hoping to do some > investigating on this this weekend. If nothing else, maybe it'll > take my mind off of the fact that Langan is going through hell with > this last bit of lamictal wean. > > > > Sooooo, can anyone tell me when I should do blood glucose testing > and what readings I should be looking for? > > > > Thanks!! > > > > , mom to Langan, 20 months old and keto kid since 11/03 but > with new (great) keto center since 3/9/04; not yet seizure free but > will be med free as soon as the lamictal clears the system!! Took > the last dose last night and mom is terrified!! > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 4, 2004 Report Share Posted April 4, 2004 Thanks for your help, Patti. 's seizures are better than before the diet, although about every third day he is still having epileptic spasms upon waking in the morning. He is also having about 3 staring seizures during the day that last about 8 seconds. He's on 1000 calories a day; is 5 years old and weighs 32 pounds. As far as the reflux issue goes, you asked what ratio is on. He is on 2.7:1. He was started on 4:1 but got too ketotic; then went down to 3:1, still too ketotic, so went down again. ' Mom to 5 years old; Lissencephaly, reflux, seizures, cp, keto kid since 3-9 Re: Re: Glucose testing The high glucose, when seen along with large ketones, could mean too many calories. How's his seizure control? The " ketone breath " smell is just like fingernail polish remover...... or actetone. The kids get that smell on their breath when they're really super ketotic. It's pretty distinctive. When Katera had it, I always knew she was TOO ketotic and in danger of dehyration..... because she would always start refusing to drink and have reflux symtoms along with being overly ketotic. She did better at between 80 and 160 for ketones. I'm reading backwards thru my inbox but I see another one from you so I'm off to read that one. Patti Re: Glucose testing Hi , Again, I'm no expert, but I think what you said about finding a pattern is the key. 70's may be a bit high, but maybe not for Langan. Seems like with Macie a common number for her was 78, sometimes with seizures and sometimes not. I'd maybe check sometime when she has the ketone smell and see what it is then to get an idea. We used to try to check when Macie was having seizures, too, but I've read some stuff from that seizures can skew glucose readings. I think just keeping good records and trying to find patterns will help. Maybe you'll be able to correlate certain meals, certain foods, certain times of day, etc. that can be related to the seizures. You'll have the extra tool of the blood ketones to help as well. In my simple mind, I always thought if ketones were high, glucose had to be low and vice versa, but we found with Macie that wasn't always the case. Finding the right numbers for Langan will be the key, and her magic numbers might look very different from someone else's. I think as with blood ketones, once you figure some things out you can back off on doing them so much. I remember Kathy telling me that when kids are doing well, sometimes they won't check blood ketones for 6 months. Wouldn't that be great? Good luck! Glenna > > I have tried to dig in the archives but I can't seem to find what I > am looking for. Maybe it is the lack of sleep from Langan's TERRIBLE > night.... Anyway.... > > > > We have the Precision Xtra machine and have been using it for BHB > readings. I also have glucose test strips, which the dietician > ordered for us, but I have not gotten instructions on when to test > glucose and what is an appropriate reading, etc. Can anyone help > me? I can ask them on Monday but I am hoping to do some > investigating on this this weekend. If nothing else, maybe it'll > take my mind off of the fact that Langan is going through hell with > this last bit of lamictal wean. > > > > Sooooo, can anyone tell me when I should do blood glucose testing > and what readings I should be looking for? > > > > Thanks!! > > > > , mom to Langan, 20 months old and keto kid since 11/03 but > with new (great) keto center since 3/9/04; not yet seizure free but > will be med free as soon as the lamictal clears the system!! Took > the last dose last night and mom is terrified!! > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 4, 2004 Report Share Posted April 4, 2004 ', Hmmm...... well, the lower ratio may explain why you're not seeing lower glucose numbers. But, for those keto clinics that test glucose....... some do see that the kids that stay in the range of like 55-75 have better control. Also, they see better control in the skinnier kids. He sounds like he doesn't weigh much for 5 yrs old, but I suppose that depends on his height. Do you know where he is for weight, percentile-wise? So..... seizures are better. That's good. There's room for improvement but better is always better! Sometimes it just takes time. Their little bodies are really fighting it at first. Calorie-wise, I think it depends a lot on their activity level. Katera was on about 850 calories most of the time she was on the diet....... from age 4 to 6. She's short, but a little on the fluffy side....and not very active. (She didn't walk independently at all until she was six, and still is much less active than a typical kid her age.) They did have her lose a couple of pound in the beginning..... since they see better control in their skinnier Keto kids. So, is reflux something that had prior to the diet? Or just since starting it? Patti, mom to Katera, age 7.5 (CP, ACC, microcephaly, global delays, etc, etc, etc,) RE: Re: Glucose testing Thanks for your help, Patti. 's seizures are better than before the diet, although about every third day he is still having epileptic spasms upon waking in the morning. He is also having about 3 staring seizures during the day that last about 8 seconds. He's on 1000 calories a day; is 5 years old and weighs 32 pounds. As far as the reflux issue goes, you asked what ratio is on. He is on 2.7:1. He was started on 4:1 but got too ketotic; then went down to 3:1, still too ketotic, so went down again. ' Mom to 5 years old; Lissencephaly, reflux, seizures, cp, keto kid since 3-9 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 4, 2004 Report Share Posted April 4, 2004 ', Hmmm...... well, the lower ratio may explain why you're not seeing lower glucose numbers. But, for those keto clinics that test glucose....... some do see that the kids that stay in the range of like 55-75 have better control. Also, they see better control in the skinnier kids. He sounds like he doesn't weigh much for 5 yrs old, but I suppose that depends on his height. Do you know where he is for weight, percentile-wise? So..... seizures are better. That's good. There's room for improvement but better is always better! Sometimes it just takes time. Their little bodies are really fighting it at first. Calorie-wise, I think it depends a lot on their activity level. Katera was on about 850 calories most of the time she was on the diet....... from age 4 to 6. She's short, but a little on the fluffy side....and not very active. (She didn't walk independently at all until she was six, and still is much less active than a typical kid her age.) They did have her lose a couple of pound in the beginning..... since they see better control in their skinnier Keto kids. So, is reflux something that had prior to the diet? Or just since starting it? Patti, mom to Katera, age 7.5 (CP, ACC, microcephaly, global delays, etc, etc, etc,) RE: Re: Glucose testing Thanks for your help, Patti. 's seizures are better than before the diet, although about every third day he is still having epileptic spasms upon waking in the morning. He is also having about 3 staring seizures during the day that last about 8 seconds. He's on 1000 calories a day; is 5 years old and weighs 32 pounds. As far as the reflux issue goes, you asked what ratio is on. He is on 2.7:1. He was started on 4:1 but got too ketotic; then went down to 3:1, still too ketotic, so went down again. ' Mom to 5 years old; Lissencephaly, reflux, seizures, cp, keto kid since 3-9 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 4, 2004 Report Share Posted April 4, 2004 ', Hmmm...... well, the lower ratio may explain why you're not seeing lower glucose numbers. But, for those keto clinics that test glucose....... some do see that the kids that stay in the range of like 55-75 have better control. Also, they see better control in the skinnier kids. He sounds like he doesn't weigh much for 5 yrs old, but I suppose that depends on his height. Do you know where he is for weight, percentile-wise? So..... seizures are better. That's good. There's room for improvement but better is always better! Sometimes it just takes time. Their little bodies are really fighting it at first. Calorie-wise, I think it depends a lot on their activity level. Katera was on about 850 calories most of the time she was on the diet....... from age 4 to 6. She's short, but a little on the fluffy side....and not very active. (She didn't walk independently at all until she was six, and still is much less active than a typical kid her age.) They did have her lose a couple of pound in the beginning..... since they see better control in their skinnier Keto kids. So, is reflux something that had prior to the diet? Or just since starting it? Patti, mom to Katera, age 7.5 (CP, ACC, microcephaly, global delays, etc, etc, etc,) RE: Re: Glucose testing Thanks for your help, Patti. 's seizures are better than before the diet, although about every third day he is still having epileptic spasms upon waking in the morning. He is also having about 3 staring seizures during the day that last about 8 seconds. He's on 1000 calories a day; is 5 years old and weighs 32 pounds. As far as the reflux issue goes, you asked what ratio is on. He is on 2.7:1. He was started on 4:1 but got too ketotic; then went down to 3:1, still too ketotic, so went down again. ' Mom to 5 years old; Lissencephaly, reflux, seizures, cp, keto kid since 3-9 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 5, 2004 Report Share Posted April 5, 2004 Patti, I believe when they weighed when starting the diet the dietician told me he was in the 5% or 10% for his weight, I know it was down there. He is 40 ½” tall, so he is quite thin, I can see his ribs when he lies down. is not very active either, he doesn’t walk, but sits in his Tumbleform chair and kicks his legs, and also kicks while lying on the floor to get him where he wants to go (mostly in circles!). So he has some nice muscle build up in his legs. has struggled with reflux for at least 3 years. We opted not to do the Nissen when he had his feeding tube placed because his stomach empties very slowly…hence the j tube. Last Sept. we did a ph probe and found he had an ulcerated esophagus. That’s when we started the cell salts I mentioned in the other email. Is it possible to lower the calories without lowering the ratio? He is on KetoCal formula. Thanks, ’ Re: Re: Glucose testing ', Hmmm...... well, the lower ratio may explain why you're not seeing lower glucose numbers. But, for those keto clinics that test glucose....... some do see that the kids that stay in the range of like 55-75 have better control. Also, they see better control in the skinnier kids. He sounds like he doesn't weigh much for 5 yrs old, but I suppose that depends on his height. Do you know where he is for weight, percentile-wise? So..... seizures are better. That's good. There's room for improvement but better is always better! Sometimes it just takes time. Their little bodies are really fighting it at first. Calorie-wise, I think it depends a lot on their activity level. Katera was on about 850 calories most of the time she was on the diet....... from age 4 to 6. She's short, but a little on the fluffy side....and not very active. (She didn't walk independently at all until she was six, and still is much less active than a typical kid her age.) They did have her lose a couple of pound in the beginning..... since they see better control in their skinnier Keto kids. So, is reflux something that had prior to the diet? Or just since starting it? Patti, mom to Katera, age 7.5 (CP, ACC, microcephaly, global delays, etc, etc, etc,) RE: Re: Glucose testing Thanks for your help, Patti. 's seizures are better than before the diet, although about every third day he is still having epileptic spasms upon waking in the morning. He is also having about 3 staring seizures during the day that last about 8 seconds. He's on 1000 calories a day; is 5 years old and weighs 32 pounds. As far as the reflux issue goes, you asked what ratio is on. He is on 2.7:1. He was started on 4:1 but got too ketotic; then went down to 3:1, still too ketotic, so went down again. ' Mom to 5 years old; Lissencephaly, reflux, seizures, cp, keto kid since 3-9 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 5, 2004 Report Share Posted April 5, 2004 Patti, I believe when they weighed when starting the diet the dietician told me he was in the 5% or 10% for his weight, I know it was down there. He is 40 ½” tall, so he is quite thin, I can see his ribs when he lies down. is not very active either, he doesn’t walk, but sits in his Tumbleform chair and kicks his legs, and also kicks while lying on the floor to get him where he wants to go (mostly in circles!). So he has some nice muscle build up in his legs. has struggled with reflux for at least 3 years. We opted not to do the Nissen when he had his feeding tube placed because his stomach empties very slowly…hence the j tube. Last Sept. we did a ph probe and found he had an ulcerated esophagus. That’s when we started the cell salts I mentioned in the other email. Is it possible to lower the calories without lowering the ratio? He is on KetoCal formula. Thanks, ’ Re: Re: Glucose testing ', Hmmm...... well, the lower ratio may explain why you're not seeing lower glucose numbers. But, for those keto clinics that test glucose....... some do see that the kids that stay in the range of like 55-75 have better control. Also, they see better control in the skinnier kids. He sounds like he doesn't weigh much for 5 yrs old, but I suppose that depends on his height. Do you know where he is for weight, percentile-wise? So..... seizures are better. That's good. There's room for improvement but better is always better! Sometimes it just takes time. Their little bodies are really fighting it at first. Calorie-wise, I think it depends a lot on their activity level. Katera was on about 850 calories most of the time she was on the diet....... from age 4 to 6. She's short, but a little on the fluffy side....and not very active. (She didn't walk independently at all until she was six, and still is much less active than a typical kid her age.) They did have her lose a couple of pound in the beginning..... since they see better control in their skinnier Keto kids. So, is reflux something that had prior to the diet? Or just since starting it? Patti, mom to Katera, age 7.5 (CP, ACC, microcephaly, global delays, etc, etc, etc,) RE: Re: Glucose testing Thanks for your help, Patti. 's seizures are better than before the diet, although about every third day he is still having epileptic spasms upon waking in the morning. He is also having about 3 staring seizures during the day that last about 8 seconds. He's on 1000 calories a day; is 5 years old and weighs 32 pounds. As far as the reflux issue goes, you asked what ratio is on. He is on 2.7:1. He was started on 4:1 but got too ketotic; then went down to 3:1, still too ketotic, so went down again. ' Mom to 5 years old; Lissencephaly, reflux, seizures, cp, keto kid since 3-9 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 5, 2004 Report Share Posted April 5, 2004 I haven't ever done the diet using the formula..... but yes, I'm sure it's possible to lower his calories without changing the ratio. The dietician would have to advise you on that. Calories are such a guessing game with our kids. It's hard to know how much they are actually using. With an ultra skinny kid, you obviously don't want to see them lose any weight..... but it would be hard to know if he's getting too many calories until a few months down the road, by observing his weight. If you weighed him again now and he had gained significantly, that would be your only clue...... and normally, I assume you'd be happy to see a little more padding over those ribs. But, in terms of seizure control, if it's contributing to higher glucose levels, it could make him more vulnerable to seizing. Not all Keto dieticians and docs look at the blood glucose levels as being important, other than not wanting them to go too low in the beginning....... our dietician feels it's almost more crucial than ketone levels.... to keep those sugar levels down in that nice low range..... in order to maintain the best control. If your team doesn't already see it that way, they may not agree. But, I guess I would suggest they weigh him more often than they might normally..... just to see if he's possibly getting more calories than he needs. Then they might want to trim just a tidge at a time and see how he does..... keeping him stable at his current weight. Our clinic says they see the best control in the kids that are down around the 25th percentile for weight, so that's a plus for . We had trouble getting Katera down under the 50th..... kept cutting calories and cutting calories...... and just didn't feel like we should go below 800 a day since she was a crawler/cruiser at that point. It's just so hard to know how many they really need..... but she was really hungry, too! Patti RE: Re: Glucose testing Thanks for your help, Patti. 's seizures are better than before the diet, although about every third day he is still having epileptic spasms upon waking in the morning. He is also having about 3 staring seizures during the day that last about 8 seconds. He's on 1000 calories a day; is 5 years old and weighs 32 pounds. As far as the reflux issue goes, you asked what ratio is on. He is on 2.7:1. He was started on 4:1 but got too ketotic; then went down to 3:1, still too ketotic, so went down again. ' Mom to 5 years old; Lissencephaly, reflux, seizures, cp, keto kid since 3-9 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.