Guest guest Posted December 21, 2003 Report Share Posted December 21, 2003 peteymedic1 wrote: > To all: > > Logan has gone from 25.5 lbs. (initiation weight) to 28.5 in four > months. The weight 50th percentile for his size is 27 lbs. He has > chubby legs and fat showing on his belly. He looks like a normally > healthy 2-year-old, not a keto kid. Whats his height done since he has been on the diet? If he had the height growth with it, it might be okay, but otherwise, might have found the source of some of your problems...... > We think we have messed up the diet by adding calories. We also think > we should cut 100cal/day back to 827cal/day. If the height growth isn't there, I would consider cutting back 50 calories. Then 5o later, if it looks like you are going in the right direction. I like smaller jumps, from based on past experience, either going up or down > By the way his blood glucose level in the ER yesterday was 52 while > urine ketones were 40+ and SG was 1.005. Have you ever tested blood gasses. Would be interesting to see how acidic he is. BTW the SG seems quite high (or low, forget how they language it) anyway, would look like he might be getting too much fluid. Have you upped that recently? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 21, 2003 Report Share Posted December 21, 2003 - Right now we are struggling with the diet to get our son's ketones up to the 80 - 160 range. We are working with 's Hopkins and their general goal is for our son to lose 2 pounds in about 2 months. In the first month he gained 1 pound so we have made two calorie decreases. With the second decrease we are starting to see the ketones go up slowly. Our son started the diet at 55 pounds, and he is 6 years old. I am very new at this but my understanding is that more calories can cause lower ketones. Also, I am a nurse and I do know that your specific gravity level indicates excess fluid---(at least in terms of the diet.) Do you have a dietician or anyone you can talk to about adjusting the diet? Good luck to you - Staci (mom of ) In ketogenic , " peteymedic1 " <peteymedic@h...> wrote: > To all: > > Logan has gone from 25.5 lbs. (initiation weight) to 28.5 in four > months. The weight 50th percentile for his size is 27 lbs. He has > chubby legs and fat showing on his belly. He looks like a normally > healthy 2-year-old, not a keto kid. > > We started in August with 862 cal. Now he's at 927 cal. We added > calories to correct times of lower ketones (possibly mistake #1). > > This morning his ketones are 5-15 and he's loaded up with Phenobarb. > We are preparing for more seizures today because the ketones are so > low. > > We think we have messed up the diet by adding calories. We also think > we should cut 100cal/day back to 827cal/day. > > What do you think? Do you think this is a good plan? How long do you > think we should do 827cal/day? Should we be cutting more or less > calories? > > By the way his blood glucose level in the ER yesterday was 52 while > urine ketones were 40+ and SG was 1.005. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 21, 2003 Report Share Posted December 21, 2003 Hi Pete and Laurie, Thanks for updating us on Logan...we've been thinking of him. I'm counting the days for you and with you until you get in to the new doctor! (Jan 12th, isn't it?) I know how scary it is to be making these important decisions on your own without a lot of guidance. We are changing neuros/keto team, and have our first new appointment Jan 27th...seems like an eternity and I absolutely can't wait. If Logan looks a bit chubby and has picked up that amount of weight, I'd say it would be safe to try decreasing cals. It is such a tricky thing to try to figure out low ketones in the morning...could it be not enough cals in the night, too much stored, on and on and on. Many times you won't know until you've experimented. My daughter Macie picked up weight quickly at the diet's initiation and stayed a little on the chubby side throughout...didn't look like a typical keto kid I guess. She did very well for a long time. Wishing you all the best, and hoping Logan gets past this rough patch very soon. Glenna Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 21, 2003 Report Share Posted December 21, 2003 and Laurie, Thanks for the Logan update. You must be so frustrated and confused. I know I am. I never know what I am seeing anymore. Luckily, we have stayed at about 40 smaller seizures per day for the last week. The best part of this is that we are weaning from Dilantin and have not seen any withdrawal seizures, yet. I'm crossing my fingers that he holds steady. These things can spin out of control so quickly. The two weeks previous were awful! I don't know how you would decide what to try next. I think you are doing a super job of trying to figure it out. Logan is so lucky to have you as is parents. I know I'm not much help here, but want to lend some support. You will always be in my thoughts and prayers. Take care. P.S. I can't remember if I told you this before or not, but Stockton was at 800 cal. when we started the diet and is at 880 now. He lost weight to start and has not gained it back, yet. He is still at just over 25 lbs. Maybe that will help with some of your calculations, whether we are doing this right or not. > To all: > > Logan has gone from 25.5 lbs. (initiation weight) to 28.5 in four > months. The weight 50th percentile for his size is 27 lbs. He has > chubby legs and fat showing on his belly. He looks like a normally > healthy 2-year-old, not a keto kid. > > We started in August with 862 cal. Now he's at 927 cal. We added > calories to correct times of lower ketones (possibly mistake #1). > > This morning his ketones are 5-15 and he's loaded up with Phenobarb. > We are preparing for more seizures today because the ketones are so > low. > > We think we have messed up the diet by adding calories. We also think > we should cut 100cal/day back to 827cal/day. > > What do you think? Do you think this is a good plan? How long do you > think we should do 827cal/day? Should we be cutting more or less > calories? > > By the way his blood glucose level in the ER yesterday was 52 while > urine ketones were 40+ and SG was 1.005. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 22, 2003 Report Share Posted December 22, 2003 , I would say that 50 calories is a lot, even 25 can make a difference. Careful weighing will indicate how much to change, but it takes several days or weeks to see a trend. If you have clear evidence to go with 100, then you can do it. I found that changes in calories were much more significant than changes in ratio. Usually the most common error on starting the diet is to have the calories set too high. Bill peteymedic1 wrote: > To all: > > Logan has gone from 25.5 lbs. (initiation weight) to 28.5 in four > months. The weight 50th percentile for his size is 27 lbs. He has > chubby legs and fat showing on his belly. He looks like a normally > healthy 2-year-old, not a keto kid. > > We started in August with 862 cal. Now he's at 927 cal. We added > calories to correct times of lower ketones (possibly mistake #1). > > This morning his ketones are 5-15 and he's loaded up with Phenobarb. > We are preparing for more seizures today because the ketones are so > low. > > We think we have messed up the diet by adding calories. We also think > we should cut 100cal/day back to 827cal/day. > > What do you think? Do you think this is a good plan? How long do you > think we should do 827cal/day? Should we be cutting more or less > calories? > > By the way his blood glucose level in the ER yesterday was 52 while > urine ketones were 40+ and SG was 1.005. > > > > > " 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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