Guest guest Posted July 26, 2004 Report Share Posted July 26, 2004 Thanks for all this - I am printing your messages off and am armed with them ready for this morning!!! It is going to be fun trying to get some of these tests done. I agree with you - I definitely think this needs ruling out. Haven't been able to measure blood ketones because I have no more sticks to do it (I am only prescribed 8 at a time!) but have done urine tests. I gave him 5mg Clobazam (thinking at least this is better than 10mg rectal diazapam)after his dinner last night at 7.30pm. He was asleep by 8.15pm and had a seizure at 10.10pm. I tested for glucose last night after all his meals etc and at 11.15pm he was 4.2 and ketones were 8 (urine stick) - does better at 8 level ketone - he is far happier and better in himself when he maintains this level. He had a seizure at 11.38pm and then slept soundly until 4am when he had a seizure and then again at 5.50am. I took a glucose reading at 7am and it was 4.8. Urine ketones for is between 4 and 8 - which is usual for him on the urine sticks in the morning. He ate everything yesterday and I spoke to his dietician who freely admits that she does not have any experience at managing children who have been on the diet for 2 years - so we are learning together on this one. I explained all your suggestions etc and she agreed that it could be a possibility - so she suggested increasing his calories further yesterday as had so many seizures the day before. I gave him an extra 400 calories yesterday - she is in work today and is going to be speaking to the consultant etc. She is very good and will do everything to help sort things out. I felt a bit better about talking to her even though we are both learning about this! The only positive thing I can say at the moment (which is probably gonna come back to bite me!) is that from waking up in the morning yesterday to the same time today he has had a total of 6 seizures and 5mg clobazam - the previous 24 hour period he had 14 seizures and 10mg rectal valium. Thanks for all your help - hopefully I will get a load of tests done today to check things out - will post how things go, but right now all your advice etc has been what has kept me going and given me something to work on because I had just drawn a blank. I cannot thank you enough - even if this doesn't turn out to be the problem (although I think it could be) - I have certainly learnt a whole lot more. Emma. - mum to who has woken up in a fairly bright mood today! > Sorry Emma, just got home and only just getting round to sitting down and > checking keto messages again, down below in ***s ... > > ----- Original Message ----- > From: " ketomum68 " > > After my posting to you last night slept without seizures > until 6am this morning - I had given him an extra snack last night > which is 3.5:1 ration of 150 calories - his total calories for a > normal day is 1860 - he is quite a tall boy although he has not grown > taller in the past year and his weight is 34.5 kgs. > > **That would have our endocrinologist tut-tutting over here, it is he that > gave the dietican (and me) a bit of a dressing down about the fact that no > one had taken enough notice of the fact that 's height had completely > stopped. Slowed growth after a period of time on the diet is a known side > effect, but stopping altogether is apparently not. That guide for > pediatricians written by Freeman (do you have this?) gives graphs of growth > rate changes when on the diet as compared to when not, and none of them have > height as stopping completely. > > >From 6am to 7.30am he had 4 T/C seizures. > > 8am Glucose was 4.5 and ketones were 1.6 > > **So at 11.55 pm the night before, glucose had been 3.6 (and that was poss > slightly elevated temporarily after the seizure) and by morn it had risen to > 4.5 without eating in between? The fact he had those TCs beforehand though > may unfortunately have skewed the results again. Did you manage any tests > through the early hrs of the mroning before he had those seizures that > started at 6 am? > Those blood ketones are just not high enough for seizure protection for > whatever reason are they > > >9am breakfast > >11.15am snack > >1pm lunch > > >3.25pm glucose 3.5 and ketones were 4.6 > >3.30pm snack > >He had a sleep between 4.30pm and 7.15pm and in this time he had 2 > small T/C seizures and 1 very tight one. > > ***What may be happening in these daytime sleeps, is that although his > blood levels at that time of day are in an acceptable range, he might be > having them because he is in irritation mode fullstop, and therefore more > prone to them breaking though in the vulnerable sleep stages. That glucose > of 3.5 and bhb of 4.6 are just about where I aim for with - bhb maybe > a bit high when comparing to a vein sample though, which would take it up > above the 5.0 mark. For some kiddies this is where they need to be, but for > , that would be a little on the high side. > > >7.30pm dinner > >8.30pm glucose 4.6 and ketones 2.6 > > **So why that big drop in ketones from earlier on when they were up at > 4.6?? It is almost like giving him meals are lowering his ketones?? > Unless...during that time of 'fasting' between 3.30 and 7.30, he ran out of > cals, (though if he was sleeping rather than active this doesn't really add > up does it, unless those TCs burnt thru a lot of cals??) and rather than > burning body fat, (IF he is in a catabolic state, this is what would happen) > he used some muscle tissue, producing glucose, which dropped his ketones? > > >9pm he had a t/c seizure - very tight again. > >9.35pm I have him an additional snack of 250 calories today. > > >10.25pm, 11pm, 11.30pm and 12.15am - he had a t/c seizure - all of > them very tight. > > **This run of seizures is worse than usual after adding a whole 250 cals? > Maybe that was too much of an increase at once? > > >12.40am glucose 4.0 and ketones 3.7 > >12.45am t/c seizure - again very tight. > >If he has any more seizures tonight I am going to have to give him > 10mg rectal valium - he is so tired. He is also quite clammy at the > moment. He is not running a temperature at all and hasn't done all > through this, but every time that boy tries to sleep he has seizures > at the moment and I can seem to break the cycle. > > ***Yes, been there, and I hated it!!! Felt like couldn't win either > way > > >I will test again in the early hours - but I never know when the > seizures will arrive. I would appreciate your thoughts on the above. > Thanks so much. > Emma. > P.S. Couldn't post this earlier - Yahoo not available - typical!!! > had another seizure at 1.40am and I had to give 10mg rectal > valium. I have tested bloods again this morning (considering he > started having seizures around 6am yesterday morning 5.45am today > glucose 4.5 and ketones are 1.6. Any thoughts! > > ***Ketones way back down again by morning, and glucose has risen again > after fasting....and that was after no seizures I take it, so not from a > seizure stress response? Like the valium stopped any more for the rest of > the night/early am? > If he has been calorie deprived, it will take a while for this to > 'correct' because when I said before the body goes thru a period of > metabolic derangement, this means that what you think is going 'in' is not > neccessarily being metabolised in that fashion. For example, you may be > giving say 30 gms of fat with a meal, but he may not be metabolsing all that > fat, some may not being absorbed, but stored instead, and the same with the > protein and carb. > Obviously you need to find out for sure whether he is in this catabolic > process or not - becausee unfortunately the process of gluceogensis where > non-caloric glucose is produced and used, can also occur when calories are > excessive, and so it can be hard to determine which way the cookie is > crumbling....However - I wouldn't expect his height to have been at a > standstill the way it he was on excess cals instead. > So if I were you, I would ask for an urgent ree dx test (to accurately > measure his correct caloric needs) and a dexa scan to see whether his body > looks to be catabolic - ie with uneven or abnormal muscle/fat distribution. > There are also some endocrine tests like growth hormone, cortisol, inuslin > etc that might tell you if anything metabolic/endocrine is out of whack to > explain the rise in glucose overnight. > Mon morn there shortly I think? Let me know if you need any more info on > 's history to pass on to your Drs, as even if it is not the same thing > happening with , I think it def needs ruling out??? > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 26, 2004 Report Share Posted July 26, 2004 Emma- I have a pack of keto stick (only used one) and haven't wanted to chuck them out because of cost. I would be so happy to send them to you if you would like. If so send your address to me shelly@... shelly, mom to Ethan Re: Us again! - Thanks for all this - I am printing your messages off and am armed with them ready for this morning!!! It is going to be fun trying to get some of these tests done. I agree with you - I definitely think this needs ruling out. Haven't been able to measure blood ketones because I have no more sticks to do it (I am only prescribed 8 at a time!) but have done urine tests. I gave him 5mg Clobazam (thinking at least this is better than 10mg rectal diazapam)after his dinner last night at 7.30pm. He was asleep by 8.15pm and had a seizure at 10.10pm. I tested for glucose last night after all his meals etc and at 11.15pm he was 4.2 and ketones were 8 (urine stick) - does better at 8 level ketone - he is far happier and better in himself when he maintains this level. He had a seizure at 11.38pm and then slept soundly until 4am when he had a seizure and then again at 5.50am. I took a glucose reading at 7am and it was 4.8. Urine ketones for is between 4 and 8 - which is usual for him on the urine sticks in the morning. He ate everything yesterday and I spoke to his dietician who freely admits that she does not have any experience at managing children who have been on the diet for 2 years - so we are learning together on this one. I explained all your suggestions etc and she agreed that it could be a possibility - so she suggested increasing his calories further yesterday as had so many seizures the day before. I gave him an extra 400 calories yesterday - she is in work today and is going to be speaking to the consultant etc. She is very good and will do everything to help sort things out. I felt a bit better about talking to her even though we are both learning about this! The only positive thing I can say at the moment (which is probably gonna come back to bite me!) is that from waking up in the morning yesterday to the same time today he has had a total of 6 seizures and 5mg clobazam - the previous 24 hour period he had 14 seizures and 10mg rectal valium. Thanks for all your help - hopefully I will get a load of tests done today to check things out - will post how things go, but right now all your advice etc has been what has kept me going and given me something to work on because I had just drawn a blank. I cannot thank you enough - even if this doesn't turn out to be the problem (although I think it could be) - I have certainly learnt a whole lot more. Emma. - mum to who has woken up in a fairly bright mood today! > Sorry Emma, just got home and only just getting round to sitting down and > checking keto messages again, down below in ***s ... > > ----- Original Message ----- > From: " ketomum68 " > > After my posting to you last night slept without seizures > until 6am this morning - I had given him an extra snack last night > which is 3.5:1 ration of 150 calories - his total calories for a > normal day is 1860 - he is quite a tall boy although he has not grown > taller in the past year and his weight is 34.5 kgs. > > **That would have our endocrinologist tut-tutting over here, it is he that > gave the dietican (and me) a bit of a dressing down about the fact that no > one had taken enough notice of the fact that 's height had completely > stopped. Slowed growth after a period of time on the diet is a known side > effect, but stopping altogether is apparently not. That guide for > pediatricians written by Freeman (do you have this?) gives graphs of growth > rate changes when on the diet as compared to when not, and none of them have > height as stopping completely. > > >From 6am to 7.30am he had 4 T/C seizures. > > 8am Glucose was 4.5 and ketones were 1.6 > > **So at 11.55 pm the night before, glucose had been 3.6 (and that was poss > slightly elevated temporarily after the seizure) and by morn it had risen to > 4.5 without eating in between? The fact he had those TCs beforehand though > may unfortunately have skewed the results again. Did you manage any tests > through the early hrs of the mroning before he had those seizures that > started at 6 am? > Those blood ketones are just not high enough for seizure protection for > whatever reason are they > > >9am breakfast > >11.15am snack > >1pm lunch > > >3.25pm glucose 3.5 and ketones were 4.6 > >3.30pm snack > >He had a sleep between 4.30pm and 7.15pm and in this time he had 2 > small T/C seizures and 1 very tight one. > > ***What may be happening in these daytime sleeps, is that although his > blood levels at that time of day are in an acceptable range, he might be > having them because he is in irritation mode fullstop, and therefore more > prone to them breaking though in the vulnerable sleep stages. That glucose > of 3.5 and bhb of 4.6 are just about where I aim for with - bhb maybe > a bit high when comparing to a vein sample though, which would take it up > above the 5.0 mark. For some kiddies this is where they need to be, but for > , that would be a little on the high side. > > >7.30pm dinner > >8.30pm glucose 4.6 and ketones 2.6 > > **So why that big drop in ketones from earlier on when they were up at > 4.6?? It is almost like giving him meals are lowering his ketones?? > Unless...during that time of 'fasting' between 3.30 and 7.30, he ran out of > cals, (though if he was sleeping rather than active this doesn't really add > up does it, unless those TCs burnt thru a lot of cals??) and rather than > burning body fat, (IF he is in a catabolic state, this is what would happen) > he used some muscle tissue, producing glucose, which dropped his ketones? > > >9pm he had a t/c seizure - very tight again. > >9.35pm I have him an additional snack of 250 calories today. > > >10.25pm, 11pm, 11.30pm and 12.15am - he had a t/c seizure - all of > them very tight. > > **This run of seizures is worse than usual after adding a whole 250 cals? > Maybe that was too much of an increase at once? > > >12.40am glucose 4.0 and ketones 3.7 > >12.45am t/c seizure - again very tight. > >If he has any more seizures tonight I am going to have to give him > 10mg rectal valium - he is so tired. He is also quite clammy at the > moment. He is not running a temperature at all and hasn't done all > through this, but every time that boy tries to sleep he has seizures > at the moment and I can seem to break the cycle. > > ***Yes, been there, and I hated it!!! Felt like couldn't win either > way > > >I will test again in the early hours - but I never know when the > seizures will arrive. I would appreciate your thoughts on the above. > Thanks so much. > Emma. > P.S. Couldn't post this earlier - Yahoo not available - typical!!! > had another seizure at 1.40am and I had to give 10mg rectal > valium. I have tested bloods again this morning (considering he > started having seizures around 6am yesterday morning 5.45am today > glucose 4.5 and ketones are 1.6. Any thoughts! > > ***Ketones way back down again by morning, and glucose has risen again > after fasting....and that was after no seizures I take it, so not from a > seizure stress response? Like the valium stopped any more for the rest of > the night/early am? > If he has been calorie deprived, it will take a while for this to > 'correct' because when I said before the body goes thru a period of > metabolic derangement, this means that what you think is going 'in' is not > neccessarily being metabolised in that fashion. For example, you may be > giving say 30 gms of fat with a meal, but he may not be metabolsing all that > fat, some may not being absorbed, but stored instead, and the same with the > protein and carb. > Obviously you need to find out for sure whether he is in this catabolic > process or not - becausee unfortunately the process of gluceogensis where > non-caloric glucose is produced and used, can also occur when calories are > excessive, and so it can be hard to determine which way the cookie is > crumbling....However - I wouldn't expect his height to have been at a > standstill the way it he was on excess cals instead. > So if I were you, I would ask for an urgent ree dx test (to accurately > measure his correct caloric needs) and a dexa scan to see whether his body > looks to be catabolic - ie with uneven or abnormal muscle/fat distribution. > There are also some endocrine tests like growth hormone, cortisol, inuslin > etc that might tell you if anything metabolic/endocrine is out of whack to > explain the rise in glucose overnight. > Mon morn there shortly I think? Let me know if you need any more info on > 's history to pass on to your Drs, as even if it is not the same thing > happening with , I think it def needs ruling out??? > > " 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...
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