Guest guest Posted December 7, 2004 Report Share Posted December 7, 2004 Hi, As we are early in the diet and doing well as you know with seizures, we're having some behavior problems at school. The past 2 days, I have gotten calls from s school saying that he has been " crazy and defiant " . He had to go the prinicipals office 2 days in a row. This is not like him. It seems to happen at about 10:30 or 11:00 in the am. When I picked him up, he was ghost white and lips white again. His teachers are viewing it as behavior of course and I'm like-something is not right here b/c he loves school and never does this. I think that he may be running out of gas as we speak and need more calories. I think his calories are " on the fence " I guess anyways and he is sooooo sensitive if he doesn't get his meals right on time perfectly, we are in trouble. Do you think that him being hungry could do this?? He tells me as soon as we get in the car take me home I'm hungry and gets upset if I turn the wrong way or anything because he wants lunch and wants it now. He scarfs it down and is hungry still. Mentally, he just seems fatigued and irritable. He gets breakfast at 745 b/c the bus gets him at 815 and then snack at 1030-1100 time frame. Lunch is at twelve. As you know, he is 1290 cal 26 g protein,45 inches tall, 47.5 lbs 2:1 ratio. The nurse said that if I got an order, she could check his blood sugar at school if we run into troubles and see if it is low. I really feel like this is calorie related and may need to adjust things. THe thing is, anywhere I take calories from causes problems at other times during the day. Any ideas??? He is doing so good and I don't want to see him struggle again. Thanks Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 7, 2004 Report Share Posted December 7, 2004 , The timing on this makes me think he's running out of fuel, too. Maybe he does need a calorie increase. You said his snack is usually at 1030. Had he eaten before the " behavior " occurred or not? Would it be possible to try moving his snack up a bit, say 10:00 ish? If that doesn't help, I would probably do a small calorie increase. AT a 2:1 ratio, he isn't getting as much fat as is " usual " on keto. Fat lasts a long time, while carb and protein are burned up pretty quickly. Since he's doing well so far at 2:1, no need to mess with that, so I think a calorie increase would be the best move. If mid morning is the problem time, maybe just adding a 50 cal snack. If he's famished at other times as well, you would probably want to spread the cal increase over the day, maybe give a little extra weight to that " bad " a.m. time. was in a similar situation when she first started the diet. She started in August so I had one week at home to get things straight before she went back to school. She started with 4 meals and no snacks. But, because of the way her school day went, it was hard to space them out evenly. Her teacher called several days in a row saying was sick (headache, stomach ache, weak, etc.) Our dietician told me to split one of her meals into two snacks, so she could have some food before lunchtime. Problem solved. Good Luck... keep us posted. Cammie > Hi, > As we are early in the diet and doing well as you know with seizures, we're > having some behavior problems at school. The past 2 days, I have gotten > calls from s school saying that he has been " crazy and defiant " . He > had to go the prinicipals office 2 days in a row. This is not like him. It > seems to happen at about 10:30 or 11:00 in the am. When I picked him up, he > was ghost white and lips white again. His teachers are viewing it as behavior > of course and I'm like-something is not right here b/c he loves school and > never does this. I think that he may be running out of gas as we speak and > need more calories. I think his calories are " on the fence " I guess anyways > and he is sooooo sensitive if he doesn't get his meals right on time perfectly, > we are in trouble. > > Do you think that him being hungry could do this?? He tells me as soon as > we get in the car take me home I'm hungry and gets upset if I turn the wrong > way or anything because he wants lunch and wants it now. He scarfs it down > and is hungry still. Mentally, he just seems fatigued and irritable. He gets > breakfast at 745 b/c the bus gets him at 815 and then snack at 1030-1100 time > frame. Lunch is at twelve. As you know, he is 1290 cal 26 g protein,45 > inches tall, 47.5 lbs 2:1 ratio. > > The nurse said that if I got an order, she could check his blood sugar at > school if we run into troubles and see if it is low. I really feel like this is > calorie related and may need to adjust things. THe thing is, anywhere I > take calories from causes problems at other times during the day. Any ideas??? > He is doing so good and I don't want to see him struggle again. > > Thanks > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 7, 2004 Report Share Posted December 7, 2004 I don't remember if I wrote but I meant to ask before if you had checked blood sugar when you talked about him being white. I would definitely check his sugar, its easy enough to do yourself with the glucose monitor diabetics use. We ran into this with Jess, seemed like her body wanted to grow but she didn't have the glucogen stores necessary to do so. WE added calories and carnitine at the same time, which turned out to be a very bad idea - carnitine was a disaster for her. But the calories did seem to help although it still happnend occasionally. So I would say either check sugar or just have them feed him earlier at school for a few days and see if there is a difference. Of course I would recommend chekcing the sugar as the better choice otherwise you won't know if its just coincidence. Isn't your dietican suggesting upping calories? BTW although carb will cause blood sugar to rise quicker, it will also fall quickly. Protien stabilizes it better over the long term , 's mom lloydandleslie@... wrote: > Hi, > As we are early in the diet and doing well as you know with seizures, > we're > having some behavior problems at school. The past 2 days, I have > gotten > calls from s school saying that he has been " crazy and > defiant " . He > had to go the prinicipals office 2 days in a row. This is not like > him. It > seems to happen at about 10:30 or 11:00 in the am. When I picked him > up, he > was ghost white and lips white again. His teachers are viewing it as > behavior > of course and I'm like-something is not right here b/c he loves > school and > never does this. I think that he may be running out of gas as we > speak and > need more calories. I think his calories are " on the fence " I guess > anyways > and he is sooooo sensitive if he doesn't get his meals right on time > perfectly, > we are in trouble. > > Do you think that him being hungry could do this?? He tells me as > soon as > we get in the car take me home I'm hungry and gets upset if I turn > the wrong > way or anything because he wants lunch and wants it now. He scarfs > it down > and is hungry still. Mentally, he just seems fatigued and > irritable. He gets > breakfast at 745 b/c the bus gets him at 815 and then snack at > 1030-1100 time > frame. Lunch is at twelve. As you know, he is 1290 cal 26 g > protein,45 > inches tall, 47.5 lbs 2:1 ratio. > > The nurse said that if I got an order, she could check his blood sugar > at > school if we run into troubles and see if it is low. I really feel > like this is > calorie related and may need to adjust things. THe thing is, anywhere > I > take calories from causes problems at other times during the day. > Any ideas??? > He is doing so good and I don't want to see him struggle again. > > Thanks > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 7, 2004 Report Share Posted December 7, 2004 Are you weaning 's meds? My son's behavior was atrocious during the medicine wean. Also, being hungry all the time is very hard, as you know. I don't think we can overestimate just how hard this diet is for kids, maybe especially school age kids. He is dealing with a lot. Hunger, not getting the foods he likes, etc. I'm not sure what you should do. A calorie increase might cause his ketones to lower and therefore make him more hungry. But, on the other hand, maybe he needs more calories, and therefore he would be less hungry. What about just adding a little more cream to his breakfast? It would raise his ratio a bit, but it would also give him more calories. The dieticians might want to see what is happening with his weight before recommending a calorie increase. I'm just going in circles, here. My son was always extremely hungry early in the diet (once he got used to the high ketones), but after several adjustments we did get the calorie/ketone balance just right. He is hungry at meal time, but not before. I think you should raise his calories. In the meantime, I really hope those teachers remain understanding of his situation. This is no small thing is doing--the diet, I mean. OK> More rambling. Maybe different kids react differently to the stress of the diet. ;My son started having 'freezing episodes'. It was pure stress. I think I caused them by dragging him off to school early in the diet when he felt so miserable. He would be crying and I was forcing him to go. He never acted out in a purposeful way, like perhaps is doing, but subconsciously he started having 'freezing' episodes--totally unconsious and unaware of those around him. But what an effective way of 'checking out' and avoiding reality. Certainly, this diet must seem like a nightmare to our school age kids. I say these things while still firmly believing in the diet. I guess I am just trying to see it from the children;s perspective, in an attempt to understand them. Thats why I think s teachers need to be especially patient with him. Gretchen > Hi, > As we are early in the diet and doing well as you know with seizures, we're > having some behavior problems at school. The past 2 days, I have gotten > calls from s school saying that he has been " crazy and defiant " . He > had to go the prinicipals office 2 days in a row. This is not like him. It > seems to happen at about 10:30 or 11:00 in the am. When I picked him up, he > was ghost white and lips white again. His teachers are viewing it as behavior > of course and I'm like-something is not right here b/c he loves school and > never does this. I think that he may be running out of gas as we speak and > need more calories. I think his calories are " on the fence " I guess anyways > and he is sooooo sensitive if he doesn't get his meals right on time perfectly, > we are in trouble. > > Do you think that him being hungry could do this?? He tells me as soon as > we get in the car take me home I'm hungry and gets upset if I turn the wrong > way or anything because he wants lunch and wants it now. He scarfs it down > and is hungry still. Mentally, he just seems fatigued and irritable. He gets > breakfast at 745 b/c the bus gets him at 815 and then snack at 1030-1100 time > frame. Lunch is at twelve. As you know, he is 1290 cal 26 g protein,45 > inches tall, 47.5 lbs 2:1 ratio. > > The nurse said that if I got an order, she could check his blood sugar at > school if we run into troubles and see if it is low. I really feel like this is > calorie related and may need to adjust things. THe thing is, anywhere I > take calories from causes problems at other times during the day. Any ideas??? > He is doing so good and I don't want to see him struggle again. > > Thanks > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 8, 2004 Report Share Posted December 8, 2004 , Our neuro ordered a glucometer so we'll be starting the checks. Our dietician ordered a calorie increase of 10% or 130 calories and we increased protein by 3 grams to 29 grams. We stated the increase by 75 calories and yikes I'm afraid but we'll just have to see what happens. He is acting really strange. I don't understand what is going on with him. He is distracted, agitated, defiant and crazy. Last week, he was perfect. Still no seizures. My gut is that it is this calorie thing and that he needs more or less of something but I don't know what. Do you have any ideas? Also, he has lost 2 pounds in a week. I know that he should not be doing that. Any thoughts Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 8, 2004 Report Share Posted December 8, 2004 , No we jumped 75 calories and are holding. We have not gone all the way up to the 130. I grrrrrrr when I tell you this about supplements. Sat, Sun and Monday am my husband gave 1 dose PRO EFA and increased his cal mag zinc and gave them all at one time. As soon as I figured this out, we stopped the PRO efa, went back down on the cal mag zinc and went back to the usual which is giving for am 125 mg depakote 500 mg carnosine 1 bug bunny sg free vitamin 2 dha omega capsules and pm 250 mg depakote 1 cal mag zinc tablet I am wondering if the supplements he gave are causing the behaviors and are not calorie related and the pale, wight loss are calorie related so its 2 things. I know, I know.......this is why I need to make a meds chart. I keep track of the med changes and he heard the dieitican talk about giving fish oils and increase calcium and just did it. Could this be causing the problems??? THanks Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 8, 2004 Report Share Posted December 8, 2004 So you jumped up the whole 130 calories?? Big jump for all at once......I think I would monitor blood sugar (to see if there is any correlation with the behaviour) and if not....I don't know, that big of a calorie jump makes me a little nervous, maybe try cutting back some first. I think he needs more calories, but I would try 50, no more than 75. But do the blood sugar first Good luck, I know how hard those times can be , 's mom lloydandleslie@... wrote: > , > Our neuro ordered a glucometer so we'll be starting the checks. Our > dietician ordered a calorie increase of 10% or 130 calories and we > increased protein > by 3 grams to 29 grams. We stated the increase by 75 calories and > yikes I'm > afraid but we'll just have to see what happens. He is acting really > strange. I don't understand what is going on with him. He is > distracted, agitated, > defiant and crazy. Last week, he was perfect. Still no seizures. > My gut > is that it is this calorie thing and that he needs more or less of > something > but I don't know what. Do you have any ideas? > > Also, he has lost 2 pounds in a week. I know that he should not be > doing > that. > > Any thoughts > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 8, 2004 Report Share Posted December 8, 2004 PS No other changes?? You haven't upped the carnosine or started any new supplements have you? MIchelle lloydandleslie@... wrote: > , > Our neuro ordered a glucometer so we'll be starting the checks. Our > dietician ordered a calorie increase of 10% or 130 calories and we > increased protein > by 3 grams to 29 grams. We stated the increase by 75 calories and > yikes I'm > afraid but we'll just have to see what happens. He is acting really > strange. I don't understand what is going on with him. He is > distracted, agitated, > defiant and crazy. Last week, he was perfect. Still no seizures. > My gut > is that it is this calorie thing and that he needs more or less of > something > but I don't know what. Do you have any ideas? > > Also, he has lost 2 pounds in a week. I know that he should not be > doing > that. > > Any thoughts > > > > Quote Link to comment Share on other sites More sharing options...
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