Guest guest Posted December 10, 2004 Report Share Posted December 10, 2004 That is a fairly big gap between 3.30 and 7.30-8.00, esp if he is an active chap - late afternoon/early evening is when the metabolism is in full swing and he would prob be burning thru cals fairly quickly. Could you maybe bring his lunch back a bit to say 12.30 and give a snack in between breakfast and lunch? That would mean you could maybe move that 3.30 meal back a bit as well to around 4 pm ish. Then the last meal of the day just before bed. This is what has worked with anyways, seems to keep him more steady throughout the day, which carries thru to his morn ketone readings, but I know they are all different as to how and when they metabolise their meals. We got our blood ketone/glucose kit through our local Medisense outlet, (in NZ, but if we have them, prob most everywhere else does too... but I think the local Diabetes Centres sell them as well. And some pharmacies here do too. Try and get the test strips on script if poss, they are very pricey otherwise. ----- Original Message ----- From: HEATHER JACKSON Thank you so much for your reply! That would be giving us the opposite effect that we are trying to obtain now wouldn't it? Infuriating! The neuro was trying to prescribe something to help him sleep - hoping that more sleep would help with less seizures during the day. I have not started him on it because I don't want to do any AED's sinse we have already weaned and he is off for now with the diet. I want to try the melatonin I think. The 24.7lbs is where he is at after a week at the lower cals he was at 24.24 a the hospital at initiation and at 25.4 about 2 weeks ago. The 24.7 puts him at the 50% - according to the dietician - I do not personally have one of the growth charts. I am going to start taking his weight weekly same time same clothes - we were not doing that before we only did it at 1 month on the diet... AS FOR ACTIVITY - he is none stop action, I do not know how he keeps going because I can not remember the last time he has taken a decent nap or had a good nights sleep. He eats 4 meals @ 7:30 11:30 3:30 and between 7:30-8:00 we are giving " regular " foods for the first three meals - and an " eggnog " for the bedtime meal - I use ketostix not a blood monitor - where do I get one of those that checks the glucose too - I did not find one on the internet?? Thanks for everything - He is not a surgery candidate and we have almost no hope besides the diet right now - the AED's have not been even a little bit helpful and the seizures and severity are increasing - I do not know what to do. mommy to Zaki 18months still trying to figure things out Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 10, 2004 Report Share Posted December 10, 2004 how many calories would you use for the snack ( he is at 790 for the day)- do 4 even meals and one snack right? ( maybe 100 cal or something?) I would like to talk through the timing with you. I would like to serve breakfast a little later because right now he is not hungry right when he wakes and I have a bit of a battle. I would like to do breakfast at 8:30 lunch at 11:30 then a snack at 3:00 ( he naps after lunch) Dinner at 5:00 and a meal before bed at 7:30-8 would that work - right now he doesn't eat dinner with us - and I hate that - Is the spacing okay? Too much time between the night before and breakfast? what would you suggest? Thanks for the help! Your expertise is so appreciated! Re: help needed- That is a fairly big gap between 3.30 and 7.30-8.00, esp if he is an active chap - late afternoon/early evening is when the metabolism is in full swing and he would prob be burning thru cals fairly quickly. Could you maybe bring his lunch back a bit to say 12.30 and give a snack in between breakfast and lunch? That would mean you could maybe move that 3.30 meal back a bit as well to around 4 pm ish. Then the last meal of the day just before bed. This is what has worked with anyways, seems to keep him more steady throughout the day, which carries thru to his morn ketone readings, but I know they are all different as to how and when they metabolise their meals. We got our blood ketone/glucose kit through our local Medisense outlet, (in NZ, but if we have them, prob most everywhere else does too... but I think the local Diabetes Centres sell them as well. And some pharmacies here do too. Try and get the test strips on script if poss, they are very pricey otherwise. ----- Original Message ----- From: HEATHER JACKSON Thank you so much for your reply! That would be giving us the opposite effect that we are trying to obtain now wouldn't it? Infuriating! The neuro was trying to prescribe something to help him sleep - hoping that more sleep would help with less seizures during the day. I have not started him on it because I don't want to do any AED's sinse we have already weaned and he is off for now with the diet. I want to try the melatonin I think. The 24.7lbs is where he is at after a week at the lower cals he was at 24.24 a the hospital at initiation and at 25.4 about 2 weeks ago. The 24.7 puts him at the 50% - according to the dietician - I do not personally have one of the growth charts. I am going to start taking his weight weekly same time same clothes - we were not doing that before we only did it at 1 month on the diet... AS FOR ACTIVITY - he is none stop action, I do not know how he keeps going because I can not remember the last time he has taken a decent nap or had a good nights sleep. He eats 4 meals @ 7:30 11:30 3:30 and between 7:30-8:00 we are giving " regular " foods for the first three meals - and an " eggnog " for the bedtime meal - I use ketostix not a blood monitor - where do I get one of those that checks the glucose too - I did not find one on the internet?? Thanks for everything - He is not a surgery candidate and we have almost no hope besides the diet right now - the AED's have not been even a little bit helpful and the seizures and severity are increasing - I do not know what to do. mommy to Zaki 18months still trying to figure things out Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 11, 2004 Report Share Posted December 11, 2004 doesn't like eating as soon as he wakes either, but I try and get him to stick to it when I can, as in the past we have had trouble if we don't. This yr seems to have been ok though, he sometimes gets up at say 7.30 and doesn't eat till 8 am or 8.15, but that is the latest I will usually let him go. (plus if he doesn't eat by them he will be late for school) If you are going to have a biggish gap between full keto meals, I would be more inclined to make that gap in the morning rather than late afternoon, as a 3.00 snack may not be enough to carry him through at that later time of day, even if he has had a nap after lunch. That is a 5 1/2 hr gap there you are otherwise looking at between 11.30 and 5.00. I try and keep it 4 hrs max between full meals to keep glucose etc as stable as poss. However I haven't had to deal with arranging meals round daytime sleeps with as he was 4 when he started keto, and I'm not entirely sure how I would have done it actually. We found the mid morn snack and 4 pm meal was the best way to get over the spacing problems here, (so that dinner and supper are not too close together either) though 4 pm is a time of day where he ends up eating his 'dinner' on his own, so not v ideal as far as eating as a family goes If you do make a change, I would try diff spacings for a few days at a time to see if it makes a difference - it took ages for us to find the right mix for , trial and error with lots of blood ketone/glucose checks (poor kid became resigned to fingerpricks after a while..) to see how each change was affecting him. Like for instance to find out he needed to eat a decent meal by 4 pm, it took a lot of glucose testing at that time of day to see when his glucose 'dipped'. We had prev been giving him a meal at 3 pm, but his glucose at that stage was still up above 4.0 from his lunch a few hrs earlier, so we knew he could go a bit longer before it got too low, and that by feeding him at 3 pm, we would prob be giving him more of a glucose 'spike' than his metabolism needed in order to be mimicing starvation. So that's how we found out that for him at least, (taking into account individual metabolism, activity times etc) 4 pm was his ideal time to eat dinner. Hope that all makes sense, let me know if it doesn't.. Re: help needed- That is a fairly big gap between 3.30 and 7.30-8.00, esp if he is an active chap - late afternoon/early evening is when the metabolism is in full swing and he would prob be burning thru cals fairly quickly. Could you maybe bring his lunch back a bit to say 12.30 and give a snack in between breakfast and lunch? That would mean you could maybe move that 3.30 meal back a bit as well to around 4 pm ish. Then the last meal of the day just before bed. This is what has worked with anyways, seems to keep him more steady throughout the day, which carries thru to his morn ketone readings, but I know they are all different as to how and when they metabolise their meals. We got our blood ketone/glucose kit through our local Medisense outlet, (in NZ, but if we have them, prob most everywhere else does too... but I think the local Diabetes Centres sell them as well. And some pharmacies here do too. Try and get the test strips on script if poss, they are very pricey otherwise. ----- Original Message ----- From: HEATHER JACKSON Thank you so much for your reply! That would be giving us the opposite effect that we are trying to obtain now wouldn't it? Infuriating! The neuro was trying to prescribe something to help him sleep - hoping that more sleep would help with less seizures during the day. I have not started him on it because I don't want to do any AED's sinse we have already weaned and he is off for now with the diet. I want to try the melatonin I think. The 24.7lbs is where he is at after a week at the lower cals he was at 24.24 a the hospital at initiation and at 25.4 about 2 weeks ago. The 24.7 puts him at the 50% - according to the dietician - I do not personally have one of the growth charts. I am going to start taking his weight weekly same time same clothes - we were not doing that before we only did it at 1 month on the diet... AS FOR ACTIVITY - he is none stop action, I do not know how he keeps going because I can not remember the last time he has taken a decent nap or had a good nights sleep. He eats 4 meals @ 7:30 11:30 3:30 and between 7:30-8:00 we are giving " regular " foods for the first three meals - and an " eggnog " for the bedtime meal - I use ketostix not a blood monitor - where do I get one of those that checks the glucose too - I did not find one on the internet?? Thanks for everything - He is not a surgery candidate and we have almost no hope besides the diet right now - the AED's have not been even a little bit helpful and the seizures and severity are increasing - I do not know what to do. mommy to Zaki 18months still trying to figure things out Quote Link to comment Share on other sites More sharing options...
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