Guest guest Posted October 12, 2004 Report Share Posted October 12, 2004 Just wanted to jump in! Yes, Luke started on a 2.5:1 ratio. He did good on it till we weaned the depakote. Since then he has been a mess. Several t/c's per week, myos & absences, they won't let up! He is up to 3.5:1 now, & I am waiting on a call from my doctor to see what out next step is. His ketones are high, his labs are okay. I think his ratio will be increased again...I hope you get things figured out for too. > > > > Except for Shan, no one, except those weaning, seems to be at such > a low ratio, which is another concern. She seems to produce ketones > so easily, and I worry that she may be prone to acidosis, like > 's daughter Langan??? > > > > Bloodwork came back good, last week. Cholestrol at 230, which is > high, but not crazy high. > > > > Any other thoughts??? , mumma to Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 12, 2004 Report Share Posted October 12, 2004 Just wanted to jump in! Yes, Luke started on a 2.5:1 ratio. He did good on it till we weaned the depakote. Since then he has been a mess. Several t/c's per week, myos & absences, they won't let up! He is up to 3.5:1 now, & I am waiting on a call from my doctor to see what out next step is. His ketones are high, his labs are okay. I think his ratio will be increased again...I hope you get things figured out for too. > > > > Except for Shan, no one, except those weaning, seems to be at such > a low ratio, which is another concern. She seems to produce ketones > so easily, and I worry that she may be prone to acidosis, like > 's daughter Langan??? > > > > Bloodwork came back good, last week. Cholestrol at 230, which is > high, but not crazy high. > > > > Any other thoughts??? , mumma to Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 12, 2004 Report Share Posted October 12, 2004 Just wanted to jump in! Yes, Luke started on a 2.5:1 ratio. He did good on it till we weaned the depakote. Since then he has been a mess. Several t/c's per week, myos & absences, they won't let up! He is up to 3.5:1 now, & I am waiting on a call from my doctor to see what out next step is. His ketones are high, his labs are okay. I think his ratio will be increased again...I hope you get things figured out for too. > > > > Except for Shan, no one, except those weaning, seems to be at such > a low ratio, which is another concern. She seems to produce ketones > so easily, and I worry that she may be prone to acidosis, like > 's daughter Langan??? > > > > Bloodwork came back good, last week. Cholestrol at 230, which is > high, but not crazy high. > > > > Any other thoughts??? , mumma to Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 21, 2004 Report Share Posted October 21, 2004 Oh.....did I say she was five, will be six in February. Short and not real active. thanks, & Hill rich.sue.hill@...> wrote: What's her exact age and weight ? I know I had those details at some stage but wouldn't know where to start looking for them now The protein allowance should stay the same whatever ratio you have her on, it is only the carb and fat portions that change with ratio increases/decreases - unless you are going for a protein slant (giving more protein than the RDA, thereby reducing carb allowance). If I use my planner for 900 cals on a 2:1 ratio, using the 32 gm prt amount I get 81.8 gms fat and 8.9 gms carb. Using the 23.82 prt allowance I get fat 81.8 gms again (this stays unchanged if cals and ratio stay the same) and carb 17.1 gms. So quite a big difference carb wise between the two plans, because of the big difference in protein amounts used in the calculations. Protein allowances per day are usually set at 1.6 gms per kg of bodyweight for 6-12 mths old, 1.2 gms per kg for 1-3 yrs old, 1.1 gms per kg for 4-6 yrs old and 1.0 gms per kg for 7-10 yrs old. The total cal allowance and protein amount is usually all aimed towards ideal weight for height, unless there is a big discrepancy either way, like either very under or over weight, in which case it is gradually aimed towards the ideal figure instead. If she hasn't actually been gaining weight recently, but has been going upwards in height, even a small amount, then this in effect means she has actually been losing weight, as height increases in kiddies are usually accompanied by an overall body mass increase. If not, then it means she has used some excess body weight to grow in height. Does that make sense? ----- Original Message ----- From: Glad you are back with us. has been having crazy high ketones, AGAIN, and is now on a 2:1 ratio and back to normal. There was some discrepancy between my planner and the dietitian, and I guess I need to stick with the planner or her ketones will rise and I will have to lower the ratio again. See what you think: 900 calories a day - 2:1 ratio Dietitian: fat 81.82 g carb 8.91 g protein 32 g JH Planner: fat 82.27 g carb 17.32 g protein 23.82 g I went with the planner, then when I realized the carbs went up with the reduction from 2.5:1 to 2:1, but not the protein, I panicked. Called the dietitian and got her calculations from the ketocalculator program. So made up new meal plans and her ketones went sky high again with the high protein......... so am back to higher carbs on the s Hopkins Planner. Any insights. She is getting enough calories, as is plump and never lost the pounds she gained on the initiation of the diet at 1200 calories, but did grow up an eeensy bit. Thanks for any help you can give. . Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 9, 2004 Report Share Posted November 9, 2004 Hi . Kirstan has complex partial seizures and probably has tonic clonics as well. Sometimes her eyes just dart from side to side and when she has really strong seizures, she usually raises her arms out to the side and the trunk of her body is bent and legs are raised, is shaking and sometimes screams. We saw the 5-20 a day immediately after the meds were stopped and when we started the diet, they stayed at 5-20 a day for about 3 months and the whole time we are changing ratios and now that I look back I don't really think we were giving each ratio the required 2 weeks you should do before making any changes. Kristan has good and bad days and we even had days with no seizures. The best she did was from the middle of May 2004 to almost the end of June 2004, she was only having 1-2 a day and none on some days too. Our problem has always been getting the high ketones which we have never gotten. Her ketones are all over the place. I really think the meds screwed Kristan up. Our theory is if she is having good and bad days on the diet, what would she be like off the diet. As we are weaning she is no worse, except for right now as I think she may be coming down with something. I think the diet did help her and am so glad we did it and haven't ruled out trying it again once we are off of it. Kristan's day time seizures are practically gone and if I notice that once we are off the diet if she starts having day time seizures then I will probably put her back on the diet. As you are still new to the diet, give it a year if you can. Try fine tuning, you could try MCT oil, to up the ketones, we used MCT oil, it didn't help with the ketones, but helped with the bowel movements. You could also add microlipid, didn't work for us, but every kid is different. What type of control would have been acceptable to us? If she was still having the 1-2 a day or even 5-10 a day, I would have accepted that. But when we haven't made any changes and all of a sudden her seizures just go up to 70 a day for no reason we just thought maybe the diet isn't the answer for us. Once she is off the diet, we will be trying a naturopath first and if that doesn't work then a drug which I don't want to, but it may come to that. Hang in there, I hope Zaki's seizures come down, it's a lot of work with the diet, but it is worth it, keep on trying with the diet and commit for a year if you can. I hope I answered all of your questions. Satnam, mom to Kristan, 23 months Keto kid since August 2003 and currently weaning from the diet > > Hi all, it's been ages since I've posted, life has been so hard > lately. > > Stella started the keto diet this year May 10th. It's been awful > for > > her, I think her seizures could not get any worse. She had 2 > wonderful > > weeks seperate of each other with no seizures, but the rest of the > time > > she's been seizing every day. And some days in status. She's due > for > > the vns on the 19th of this month, and i'm just wiped out, i've hit > > rock bottom with my emotions. Last night while giving stella her > bath, > > I just broke down, her little body which is tiny now she's on the > diet, > > is so beautiful and I can't imagine seeing those nasty scars on her > > neck and chest, I know it's a chance for her, and it's only chance, > but > > it just kills me that there is nothing else. Our kids who are so > > beautiful and loving and sweet, and just so innocent have to endure > > this nasty disability and for stella and those kids who are having > such > > a tough time out there it's just not fair. She had an emergency > eeg > > last friday and it proved she was in status, not TC status but some > sub > > clinical status where she would have periods of no response, her > head > > would droop, she drool, her hands would twich, eyes and eyebrows > > twitching, her legs or arms may jerk or her head would throw back > > little myoclonics I guess, then there would be the odd TC thrown in > > too. They put her on a huge dose of klonopin to try to stop the > status > > which it has done, but now she's a wreck, so emotional, can barely > hold > > her head up, is drooling all the time, cries when I walk out of the > > room, can barely talk. I swear it's gone from bad to worse. What > I > > wouldn't do to trade places with her and take it all away. > > So now i trying to figure out if I take her off the diet and let > her > > enjoy food again, or keep her on it with the vns. Her seizures for > > those of you who don't know anything about her can range from one > to > > over 100 in a day, with regular status events. > > Sorry about my emotional rambling, > > amanda > > > > > > Mom to Stella, age 51/2, started keto diet May 10th 2004. On > lamictal > > and diamox, just weaned diazepam (yippeee). Still waiting for > Stella > > to be seizure free, but she's doing much better. Failed every med > > available. Next is the VNS. Also, Anisa age 10, healthy, vibrant, > > beautiful and a wonderful big sis. > > > > > > " 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...
Guest guest Posted November 11, 2004 Report Share Posted November 11, 2004 Satnam, Is she constipated? Bill kristansmommy wrote: > > Hi , the pediatrician saw Kristan yesterday and said she thinks > that she is fine. She couldn't explain why she was throwing up, > asked if she had diarrhea, she said if they throw up then it can be > following by diarrhea, she may have had some stomach bug. Anyways, > we get home and are in the middle of a feed and she has a very > intense seizure and then threw everything up. She was so tired, > didn't even cry and just fell asleep and kept having seizures. This > morning she hasn't had any fluids. I got a solid meal into her and > part of a snack, and have tried to syringe water into her, pour a > little bit down her throat, nothing, she just spills it out. I am > going to try to get jello in her as it is basically water. > > Her ped said that she doesn't have an ear infection. Why is she > throwing up? She is teething for sure, the ped even commented that > she could see teeth coming in. Poor thing cried for an hour > yesterday evening and there was no comforting her, she just cried it > out. > > At least isn't seizuring, hopefully the 2.3:1 ratio will keep > her satisfied and she's back to her normal self. You said you give > cream before bed to up her ketones, is this part of her meal > plan worked in or do you just give her extra once in a while when you > need to? > > So, don't know what is wrong with Kristan, she has no appetite and > thankfully no throwing up today. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 12, 2004 Report Share Posted November 12, 2004 Dear Satnam Glad Kristan seems over the hump on this thing. Have you ever read THE OUT OF SYNC CHILD ? It is about sensory integration, and I am thinking more and more this is an issue with and many others that are suffering seizure disorders. Your Occupational Therapist probably addresses the issues, but it is a good read, if you are interested. You may wish to check at the library. 's disposition has been nasty lately, and I am wondering if changing the ratio makes a difference. She wet herself today, which is so unusual since she really " got " potty trained once on keto. Her attitude/demeanor was much sunnier on a higher ratio. Have you ever aheard of anything like that? She is almost totally on 2.3:1 now, but maybe she is better at 2.5:1 and I just use the apple juice when I need to, or add some extra carbs that she would love. Her weight is holding steady. She can talk, but not enough to express her feelings. I guess that take some maturity. We can read her pretty well, but this has me stumped. I hope Kristan is well enough that you can have a nice weekend. Having a good one makes the week's trials fade, doesn't it. Hugs......to you and Kristan. kristansmommy skkahalma@...> wrote: Hi , she took another bottle, so that makes me feel better and she finally had a wet diaper. Kristan doesn't finger feed. She won't reach or hold onto anything. Seizures are coming down and only had one seizure during the day while awake, today has been good, 13 seizures all while sleeping, I'll take that over the 60 she had Tuesday. It is so hard when they are constipated. I find going for walks is relaxing and Kristan enjoys looking around when she is out. Thanks for your support , I know you will figure everything out for . Satnam > > > > > > > > > > > > Hi everyone, I feel so stupid asking this. I don't do > > > Kristan's > > > > > > recipes on a meal planner as her dietitian does and I want > to > > > > move > > > > > > Kristan to the 2.5:1 ratio and her dietitian is real busy > and > > > > > hasn't > > > > > > gotten me the new recipes and I am tired of waiting. > > > > > > > > > > > > I downloaded the Stanford Meal Planner and the how to > > > > instructions > > > > > on > > > > > > how to use the meal planner and I plug in the ratio, > > calories, > > > > etc. > > > > > > and it shows the correct per meal allowance and then it > says > > > that > > > > > the > > > > > > meal planner will automatically place the grams of protein, > > > carb > > > > > and > > > > > > fat in the cells to the left of the food, well it's to the > > > right, > > > > > not > > > > > > the left, and then it says to manipulate the amount in food > > in > > > > > grams > > > > > > to the left of the food name. > > > > > > > > > > > > I don't understand how you know what amount of food in > grams > > > you > > > > > > should be entering? Do you just play with it until you see > > the > > > > > > correct ratio and calories at the bottom? I know I sound > > like > > > an > > > > > > idiot, I am missing something. Please HELP. I need the > Meal > > > > > Planner > > > > > > Instructions for Dummies! > > > > > > > > > > > > Satnam, mom to Kristan, 23 months > > > > > > Keto kid since August 2003 and currently weaning from the > diet > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > " 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...
Guest guest Posted November 12, 2004 Report Share Posted November 12, 2004 Jess got really nasty and miserable for a while as weaned off the diet......never did figure out why, but it did eventually pass. Now she is just back to her ordinary level of miserableness LOL wrote: > Dear Satnam > > Glad Kristan seems over the hump on this thing. Have you ever read > THE OUT OF SYNC CHILD ? It is about sensory integration, and I am > thinking more and more this is an issue with and many others that > are suffering seizure disorders. Your Occupational Therapist probably > addresses the issues, but it is a good read, if you are interested. > You may wish to check at the library. > > 's disposition has been nasty lately, and I am wondering if > changing the ratio makes a difference. She wet herself today, which > is so unusual since she really " got " potty trained once on keto. Her > attitude/demeanor was much sunnier on a higher ratio. Have you ever > aheard of anything like that? She is almost totally on 2.3:1 now, but > maybe she is better at 2.5:1 and I just use the apple juice when I > need to, or add some extra carbs that she would love. Her weight is > holding steady. > > She can talk, but not enough to express her feelings. I guess that > take some maturity. We can read her pretty well, but this has me > stumped. > > I hope Kristan is well enough that you can have a nice weekend. > Having a good one makes the week's trials fade, doesn't it. > > Hugs......to you and Kristan. > > > > kristansmommy skkahalma@...> wrote: > > Hi , she took another bottle, so that makes me feel better and > she finally had a wet diaper. Kristan doesn't finger feed. She > won't reach or hold onto anything. Seizures are coming down and only > had one seizure during the day while awake, today has been good, 13 > seizures all while sleeping, I'll take that over the 60 she had > Tuesday. > > It is so hard when they are constipated. I find going for walks is > relaxing and Kristan enjoys looking around when she is out. > > Thanks for your support , I know you will figure everything out > for . > > Satnam > > > > > > > > > > > > > > > > Hi everyone, I feel so stupid asking this. I don't do > > > > Kristan's > > > > > > > recipes on a meal planner as her dietitian does and I > want > > to > > > > > move > > > > > > > Kristan to the 2.5:1 ratio and her dietitian is real busy > > and > > > > > > hasn't > > > > > > > gotten me the new recipes and I am tired of waiting. > > > > > > > > > > > > > > I downloaded the Stanford Meal Planner and the how to > > > > > instructions > > > > > > on > > > > > > > how to use the meal planner and I plug in the ratio, > > > calories, > > > > > etc. > > > > > > > and it shows the correct per meal allowance and then it > > says > > > > that > > > > > > the > > > > > > > meal planner will automatically place the grams of > protein, > > > > carb > > > > > > and > > > > > > > fat in the cells to the left of the food, well it's to > the > > > > right, > > > > > > not > > > > > > > the left, and then it says to manipulate the amount in > food > > > in > > > > > > grams > > > > > > > to the left of the food name. > > > > > > > > > > > > > > I don't understand how you know what amount of food in > > grams > > > > you > > > > > > > should be entering? Do you just play with it until you > see > > > the > > > > > > > correct ratio and calories at the bottom? I know I sound > > > like > > > > an > > > > > > > idiot, I am missing something. Please HELP. I need the > > Meal > > > > > > Planner > > > > > > > Instructions for Dummies! > > > > > > > > > > > > > > Satnam, mom to Kristan, 23 months > > > > > > > Keto kid since August 2003 and currently weaning from the > > diet > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > " 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...
Guest guest Posted November 13, 2004 Report Share Posted November 13, 2004 Hi , no I have never read the book you are referring to. I'll try to get it from the library. I don't know what to say about 's attitude/demeanor, you know her best and I know you will figure it out soon. Kristan is doing better, still struggling to get a bottle into her, but I eventually get her to take it, so that's good. Take care, Satnam > > > > > > > > > > > > > > Hi everyone, I feel so stupid asking this. I don't do > > > > Kristan's > > > > > > > recipes on a meal planner as her dietitian does and I > want > > to > > > > > move > > > > > > > Kristan to the 2.5:1 ratio and her dietitian is real busy > > and > > > > > > hasn't > > > > > > > gotten me the new recipes and I am tired of waiting. > > > > > > > > > > > > > > I downloaded the Stanford Meal Planner and the how to > > > > > instructions > > > > > > on > > > > > > > how to use the meal planner and I plug in the ratio, > > > calories, > > > > > etc. > > > > > > > and it shows the correct per meal allowance and then it > > says > > > > that > > > > > > the > > > > > > > meal planner will automatically place the grams of > protein, > > > > carb > > > > > > and > > > > > > > fat in the cells to the left of the food, well it's to > the > > > > right, > > > > > > not > > > > > > > the left, and then it says to manipulate the amount in > food > > > in > > > > > > grams > > > > > > > to the left of the food name. > > > > > > > > > > > > > > I don't understand how you know what amount of food in > > grams > > > > you > > > > > > > should be entering? Do you just play with it until you > see > > > the > > > > > > > correct ratio and calories at the bottom? I know I sound > > > like > > > > an > > > > > > > idiot, I am missing something. Please HELP. I need the > > Meal > > > > > > Planner > > > > > > > Instructions for Dummies! > > > > > > > > > > > > > > Satnam, mom to Kristan, 23 months > > > > > > > Keto kid since August 2003 and currently weaning from the > > diet > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > " 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...
Guest guest Posted November 13, 2004 Report Share Posted November 13, 2004 Dear Satnam We are getting ready for winter and had some things to do in the yard today, and that is her happiest place - outside, so it was a great time. She came in hungry and tired, and fell asleep almost immediately. I think this lower ratio just is making her hungry and if the 2.3:1 doesn't do it, I will go back to the 2.5:1 and just give her apple slices that she loves to bring the ketones down if I see them climbing too high. I usually check ketones quite a bit, and will just need to make sure I am. Glad Kristan is on the mend. And, that she is not dehydrating. Does she usually love her bottle? drank on a bottle until she was three. She was so sick, and it was the only way I could get nourishment into her. In the end, before the med wean, she wasn't even keen on the bottle. Too bad Kristan can't tolerate eggs. The custards are so smooth and go down so easily. They have sure been a big hit with of late. . kristansmommy skkahalma@...> wrote: Hi , no I have never read the book you are referring to. I'll try to get it from the library. I don't know what to say about 's attitude/demeanor, you know her best and I know you will figure it out soon. Kristan is doing better, still struggling to get a bottle into her, but I eventually get her to take it, so that's good. Take care, Satnam > > > > > > > > > > > > > > Hi everyone, I feel so stupid asking this. I don't do > > > > Kristan's > > > > > > > recipes on a meal planner as her dietitian does and I > want > > to > > > > > move > > > > > > > Kristan to the 2.5:1 ratio and her dietitian is real busy > > and > > > > > > hasn't > > > > > > > gotten me the new recipes and I am tired of waiting. > > > > > > > > > > > > > > I downloaded the Stanford Meal Planner and the how to > > > > > instructions > > > > > > on > > > > > > > how to use the meal planner and I plug in the ratio, > > > calories, > > > > > etc. > > > > > > > and it shows the correct per meal allowance and then it > > says > > > > that > > > > > > the > > > > > > > meal planner will automatically place the grams of > protein, > > > > carb > > > > > > and > > > > > > > fat in the cells to the left of the food, well it's to > the > > > > right, > > > > > > not > > > > > > > the left, and then it says to manipulate the amount in > food > > > in > > > > > > grams > > > > > > > to the left of the food name. > > > > > > > > > > > > > > I don't understand how you know what amount of food in > > grams > > > > you > > > > > > > should be entering? Do you just play with it until you > see > > > the > > > > > > > correct ratio and calories at the bottom? I know I sound > > > like > > > > an > > > > > > > idiot, I am missing something. Please HELP. I need the > > Meal > > > > > > Planner > > > > > > > Instructions for Dummies! > > > > > > > > > > > > > > Satnam, mom to Kristan, 23 months > > > > > > > Keto kid since August 2003 and currently weaning from the > > diet > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > " 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...
Guest guest Posted November 13, 2004 Report Share Posted November 13, 2004 Dear Satnam We are getting ready for winter and had some things to do in the yard today, and that is her happiest place - outside, so it was a great time. She came in hungry and tired, and fell asleep almost immediately. I think this lower ratio just is making her hungry and if the 2.3:1 doesn't do it, I will go back to the 2.5:1 and just give her apple slices that she loves to bring the ketones down if I see them climbing too high. I usually check ketones quite a bit, and will just need to make sure I am. Glad Kristan is on the mend. And, that she is not dehydrating. Does she usually love her bottle? drank on a bottle until she was three. She was so sick, and it was the only way I could get nourishment into her. In the end, before the med wean, she wasn't even keen on the bottle. Too bad Kristan can't tolerate eggs. The custards are so smooth and go down so easily. They have sure been a big hit with of late. . kristansmommy skkahalma@...> wrote: Hi , no I have never read the book you are referring to. I'll try to get it from the library. I don't know what to say about 's attitude/demeanor, you know her best and I know you will figure it out soon. Kristan is doing better, still struggling to get a bottle into her, but I eventually get her to take it, so that's good. Take care, Satnam > > > > > > > > > > > > > > Hi everyone, I feel so stupid asking this. I don't do > > > > Kristan's > > > > > > > recipes on a meal planner as her dietitian does and I > want > > to > > > > > move > > > > > > > Kristan to the 2.5:1 ratio and her dietitian is real busy > > and > > > > > > hasn't > > > > > > > gotten me the new recipes and I am tired of waiting. > > > > > > > > > > > > > > I downloaded the Stanford Meal Planner and the how to > > > > > instructions > > > > > > on > > > > > > > how to use the meal planner and I plug in the ratio, > > > calories, > > > > > etc. > > > > > > > and it shows the correct per meal allowance and then it > > says > > > > that > > > > > > the > > > > > > > meal planner will automatically place the grams of > protein, > > > > carb > > > > > > and > > > > > > > fat in the cells to the left of the food, well it's to > the > > > > right, > > > > > > not > > > > > > > the left, and then it says to manipulate the amount in > food > > > in > > > > > > grams > > > > > > > to the left of the food name. > > > > > > > > > > > > > > I don't understand how you know what amount of food in > > grams > > > > you > > > > > > > should be entering? Do you just play with it until you > see > > > the > > > > > > > correct ratio and calories at the bottom? I know I sound > > > like > > > > an > > > > > > > idiot, I am missing something. Please HELP. I need the > > Meal > > > > > > Planner > > > > > > > Instructions for Dummies! > > > > > > > > > > > > > > Satnam, mom to Kristan, 23 months > > > > > > > Keto kid since August 2003 and currently weaning from the > > diet > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > " 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...
Guest guest Posted November 13, 2004 Report Share Posted November 13, 2004 Dear Satnam We are getting ready for winter and had some things to do in the yard today, and that is her happiest place - outside, so it was a great time. She came in hungry and tired, and fell asleep almost immediately. I think this lower ratio just is making her hungry and if the 2.3:1 doesn't do it, I will go back to the 2.5:1 and just give her apple slices that she loves to bring the ketones down if I see them climbing too high. I usually check ketones quite a bit, and will just need to make sure I am. Glad Kristan is on the mend. And, that she is not dehydrating. Does she usually love her bottle? drank on a bottle until she was three. She was so sick, and it was the only way I could get nourishment into her. In the end, before the med wean, she wasn't even keen on the bottle. Too bad Kristan can't tolerate eggs. The custards are so smooth and go down so easily. They have sure been a big hit with of late. . kristansmommy skkahalma@...> wrote: Hi , no I have never read the book you are referring to. I'll try to get it from the library. I don't know what to say about 's attitude/demeanor, you know her best and I know you will figure it out soon. Kristan is doing better, still struggling to get a bottle into her, but I eventually get her to take it, so that's good. Take care, Satnam > > > > > > > > > > > > > > Hi everyone, I feel so stupid asking this. I don't do > > > > Kristan's > > > > > > > recipes on a meal planner as her dietitian does and I > want > > to > > > > > move > > > > > > > Kristan to the 2.5:1 ratio and her dietitian is real busy > > and > > > > > > hasn't > > > > > > > gotten me the new recipes and I am tired of waiting. > > > > > > > > > > > > > > I downloaded the Stanford Meal Planner and the how to > > > > > instructions > > > > > > on > > > > > > > how to use the meal planner and I plug in the ratio, > > > calories, > > > > > etc. > > > > > > > and it shows the correct per meal allowance and then it > > says > > > > that > > > > > > the > > > > > > > meal planner will automatically place the grams of > protein, > > > > carb > > > > > > and > > > > > > > fat in the cells to the left of the food, well it's to > the > > > > right, > > > > > > not > > > > > > > the left, and then it says to manipulate the amount in > food > > > in > > > > > > grams > > > > > > > to the left of the food name. > > > > > > > > > > > > > > I don't understand how you know what amount of food in > > grams > > > > you > > > > > > > should be entering? Do you just play with it until you > see > > > the > > > > > > > correct ratio and calories at the bottom? I know I sound > > > like > > > > an > > > > > > > idiot, I am missing something. Please HELP. I need the > > Meal > > > > > > Planner > > > > > > > Instructions for Dummies! > > > > > > > > > > > > > > Satnam, mom to Kristan, 23 months > > > > > > > Keto kid since August 2003 and currently weaning from the > > diet > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > " 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...
Guest guest Posted November 14, 2004 Report Share Posted November 14, 2004 , We noticed that with too and I wonder if the additional carbs than lessens their ketosis makes them more hungry and thus more irritable. Just wondering??? Hope things get better Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 15, 2004 Report Share Posted November 15, 2004 Dear , I can relate to that and I really think that it has to do with getting to much carb and or calories. does just great on his meals but when he gets too many calories or we end up with him starving and he literally will get up from the dinner table and ask what can I have for snack every 5 minutes. He will then get crazy and get into things like lotion, color on things and do random odd things that he normally doesn't do. One of the triggers for him was when he snuck food, he would start to crave and crave. He would dig through the trash and sneak any chance he could get. I could not turn my back for one minute. And behavior was awful. i really feel for you and what you are going through. What we do when gets like this is what I call de programming. Normally, we do this when he has been at my moms who after 4 years still does not get the diet. She really tries but she is a food addict herself and thinks that as long as it is carb free or low carb, it can be given in unlimited amounts. That is why the Atkins isn't working for us. I think needs calorie control as well. Anyway, I pretty much skip a meal or 2 and then talk to him alot about that mommy is trying to help him feel better and then we are really strict-no snacks for about 1 day. That is all it takes for us and then keep him really busy. We go to the store, for drives, to the car wash, etc and do things that do not have food invloved until we can get his food obsessions cubed. Lots of luck to you and thanks for your nod about our " attitude " with the school. So far, it has worked and they treat so good and they all just love him. Keep me posted on and the " food Cravings " Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 15, 2004 Report Share Posted November 15, 2004 , Hang in there! There is always light at the end of the dark tunnel. I will keep you in my prayers! Love Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 16, 2004 Report Share Posted November 16, 2004 Hi , Kristan use to love her bottle, but lately she just doesn't want it, it's the teething. Her canines just erupted so hopefully things will settle down and she can go back to drinking the bottle and hopefully eating. We had a fight today, she sure let me know that she didn't want the spoon in her mouth I just heard today Kristan's finally been booked for an MRI next month, they wanted to do one when she is two and she will be on Nov. 28. I'm trying not to get my hopes up, I have a feeling there will be no answer from the MRI. We saw the geneticist yesterday and he thinks there is a problem with the functional part of her brain and that it may be genetic but not hereditary. HE still has to do more research and will get back to us. I asked him if she would have Lennox Gastaut Syndrome and he said technically you could say she does, but he needs to know the cause b/f he can say the exact condition she has. I hope the 2.3:1 ratio kicks in for and she won't be hungry, glad to hear there are no seizures. Satnam > Dear Satnam > > We are getting ready for winter and had some things to do in the yard today, and that is her happiest place - outside, so it was a great time. She came in hungry and tired, and fell asleep almost immediately. I think this lower ratio just is making her hungry and if the 2.3:1 doesn't do it, I will go back to the 2.5:1 and just give her apple slices that she loves to bring the ketones down if I see them climbing too high. I usually check ketones quite a bit, and will just need to make sure I am. > > Glad Kristan is on the mend. And, that she is not dehydrating. Does she usually love her bottle? drank on a bottle until she was three. She was so sick, and it was the only way I could get nourishment into her. In the end, before the med wean, she wasn't even keen on the bottle. > > Too bad Kristan can't tolerate eggs. The custards are so smooth and go down so easily. They have sure been a big hit with of late. > > . > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 16, 2004 Report Share Posted November 16, 2004 Hi , Kristan use to love her bottle, but lately she just doesn't want it, it's the teething. Her canines just erupted so hopefully things will settle down and she can go back to drinking the bottle and hopefully eating. We had a fight today, she sure let me know that she didn't want the spoon in her mouth I just heard today Kristan's finally been booked for an MRI next month, they wanted to do one when she is two and she will be on Nov. 28. I'm trying not to get my hopes up, I have a feeling there will be no answer from the MRI. We saw the geneticist yesterday and he thinks there is a problem with the functional part of her brain and that it may be genetic but not hereditary. HE still has to do more research and will get back to us. I asked him if she would have Lennox Gastaut Syndrome and he said technically you could say she does, but he needs to know the cause b/f he can say the exact condition she has. I hope the 2.3:1 ratio kicks in for and she won't be hungry, glad to hear there are no seizures. Satnam > Dear Satnam > > We are getting ready for winter and had some things to do in the yard today, and that is her happiest place - outside, so it was a great time. She came in hungry and tired, and fell asleep almost immediately. I think this lower ratio just is making her hungry and if the 2.3:1 doesn't do it, I will go back to the 2.5:1 and just give her apple slices that she loves to bring the ketones down if I see them climbing too high. I usually check ketones quite a bit, and will just need to make sure I am. > > Glad Kristan is on the mend. And, that she is not dehydrating. Does she usually love her bottle? drank on a bottle until she was three. She was so sick, and it was the only way I could get nourishment into her. In the end, before the med wean, she wasn't even keen on the bottle. > > Too bad Kristan can't tolerate eggs. The custards are so smooth and go down so easily. They have sure been a big hit with of late. > > . > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 16, 2004 Report Share Posted November 16, 2004 Hi , Kristan use to love her bottle, but lately she just doesn't want it, it's the teething. Her canines just erupted so hopefully things will settle down and she can go back to drinking the bottle and hopefully eating. We had a fight today, she sure let me know that she didn't want the spoon in her mouth I just heard today Kristan's finally been booked for an MRI next month, they wanted to do one when she is two and she will be on Nov. 28. I'm trying not to get my hopes up, I have a feeling there will be no answer from the MRI. We saw the geneticist yesterday and he thinks there is a problem with the functional part of her brain and that it may be genetic but not hereditary. HE still has to do more research and will get back to us. I asked him if she would have Lennox Gastaut Syndrome and he said technically you could say she does, but he needs to know the cause b/f he can say the exact condition she has. I hope the 2.3:1 ratio kicks in for and she won't be hungry, glad to hear there are no seizures. Satnam > Dear Satnam > > We are getting ready for winter and had some things to do in the yard today, and that is her happiest place - outside, so it was a great time. She came in hungry and tired, and fell asleep almost immediately. I think this lower ratio just is making her hungry and if the 2.3:1 doesn't do it, I will go back to the 2.5:1 and just give her apple slices that she loves to bring the ketones down if I see them climbing too high. I usually check ketones quite a bit, and will just need to make sure I am. > > Glad Kristan is on the mend. And, that she is not dehydrating. Does she usually love her bottle? drank on a bottle until she was three. She was so sick, and it was the only way I could get nourishment into her. In the end, before the med wean, she wasn't even keen on the bottle. > > Too bad Kristan can't tolerate eggs. The custards are so smooth and go down so easily. They have sure been a big hit with of late. > > . > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 16, 2004 Report Share Posted November 16, 2004 Dear Satnam had an MRI, well two. One with dye injected and one without. Anyway, they used a hydro..something to knock her out so she wouldn't move during the MRI and told me to check to see afterwards if there was any reaction. She broke out in a rash. After the MRI though she slept and slept without a seizure because of the sedation. It was wonderful, as she was seizuring so much at that time. Anyway, because of her reaction she cannot have that kind of anesthetic again, or it could kill her. I guess she is the only patient that ever had that reaction at our hospital. Leave it to ! Oh, they found nothing organically wrong. Maybe Kristan's will give a clue to what is going on. That poor baby sure has been through a lot. Are you considering taking her to a chiropractor? You know, when first started seizuring someone suggested that to me, but the neuro didn't think much of the idea.... like the drugs were a great idea! . kristansmommy skkahalma@...> wrote: Hi , Kristan use to love her bottle, but lately she just doesn't want it, it's the teething. Her canines just erupted so hopefully things will settle down and she can go back to drinking the bottle and hopefully eating. We had a fight today, she sure let me know that she didn't want the spoon in her mouth I just heard today Kristan's finally been booked for an MRI next month, they wanted to do one when she is two and she will be on Nov. 28. I'm trying not to get my hopes up, I have a feeling there will be no answer from the MRI. We saw the geneticist yesterday and he thinks there is a problem with the functional part of her brain and that it may be genetic but not hereditary. HE still has to do more research and will get back to us. I asked him if she would have Lennox Gastaut Syndrome and he said technically you could say she does, but he needs to know the cause b/f he can say the exact condition she has. I hope the 2.3:1 ratio kicks in for and she won't be hungry, glad to hear there are no seizures. Satnam > Dear Satnam > > We are getting ready for winter and had some things to do in the yard today, and that is her happiest place - outside, so it was a great time. She came in hungry and tired, and fell asleep almost immediately. I think this lower ratio just is making her hungry and if the 2.3:1 doesn't do it, I will go back to the 2.5:1 and just give her apple slices that she loves to bring the ketones down if I see them climbing too high. I usually check ketones quite a bit, and will just need to make sure I am. > > Glad Kristan is on the mend. And, that she is not dehydrating. Does she usually love her bottle? drank on a bottle until she was three. She was so sick, and it was the only way I could get nourishment into her. In the end, before the med wean, she wasn't even keen on the bottle. > > Too bad Kristan can't tolerate eggs. The custards are so smooth and go down so easily. They have sure been a big hit with of late. > > . > " 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...
Guest guest Posted November 16, 2004 Report Share Posted November 16, 2004 Dear Satnam had an MRI, well two. One with dye injected and one without. Anyway, they used a hydro..something to knock her out so she wouldn't move during the MRI and told me to check to see afterwards if there was any reaction. She broke out in a rash. After the MRI though she slept and slept without a seizure because of the sedation. It was wonderful, as she was seizuring so much at that time. Anyway, because of her reaction she cannot have that kind of anesthetic again, or it could kill her. I guess she is the only patient that ever had that reaction at our hospital. Leave it to ! Oh, they found nothing organically wrong. Maybe Kristan's will give a clue to what is going on. That poor baby sure has been through a lot. Are you considering taking her to a chiropractor? You know, when first started seizuring someone suggested that to me, but the neuro didn't think much of the idea.... like the drugs were a great idea! . kristansmommy skkahalma@...> wrote: Hi , Kristan use to love her bottle, but lately she just doesn't want it, it's the teething. Her canines just erupted so hopefully things will settle down and she can go back to drinking the bottle and hopefully eating. We had a fight today, she sure let me know that she didn't want the spoon in her mouth I just heard today Kristan's finally been booked for an MRI next month, they wanted to do one when she is two and she will be on Nov. 28. I'm trying not to get my hopes up, I have a feeling there will be no answer from the MRI. We saw the geneticist yesterday and he thinks there is a problem with the functional part of her brain and that it may be genetic but not hereditary. HE still has to do more research and will get back to us. I asked him if she would have Lennox Gastaut Syndrome and he said technically you could say she does, but he needs to know the cause b/f he can say the exact condition she has. I hope the 2.3:1 ratio kicks in for and she won't be hungry, glad to hear there are no seizures. Satnam > Dear Satnam > > We are getting ready for winter and had some things to do in the yard today, and that is her happiest place - outside, so it was a great time. She came in hungry and tired, and fell asleep almost immediately. I think this lower ratio just is making her hungry and if the 2.3:1 doesn't do it, I will go back to the 2.5:1 and just give her apple slices that she loves to bring the ketones down if I see them climbing too high. I usually check ketones quite a bit, and will just need to make sure I am. > > Glad Kristan is on the mend. And, that she is not dehydrating. Does she usually love her bottle? drank on a bottle until she was three. She was so sick, and it was the only way I could get nourishment into her. In the end, before the med wean, she wasn't even keen on the bottle. > > Too bad Kristan can't tolerate eggs. The custards are so smooth and go down so easily. They have sure been a big hit with of late. > > . > " 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...
Guest guest Posted November 16, 2004 Report Share Posted November 16, 2004 Dear You are the only one that has ever addressed this issue, that I recall. I wonder if she will ever leave the kitchen once she is off the diet! She wants wants wants. I have seen her wild and weird behavior diminish some since on the higher ratio. She was a bit more manageable today, her second day on 2.5:1. When her ketones were high all the time she didn't want to eat, so I may just have to go higher and then manage them at nightime when they look like they may become a problem. How fast did you wean ? If I recall, she was on the diet for a long time, too. . mmc@... wrote: well you're describing, or have described, .....even now off the diet for a few months there is a definite food obsession wrote: > Dear > > It is worsening and she is just obsessed with food and her behavior is > just horrid. She has always been a dear little girl. Very sweet. > She is delayed, but busy and productive. No more. She lights from > one thing to another, and is nasty! > > I am upping the ratio to 2.5, knowing I can always give her some extra > carbs if the ketosis goes to high. If that doesn't work, I will up it > again in a couple of weeks. This behavioral stuff is CRAZY. I had > never heard of it before. Maybe it is real hunger, but when she > finishes a meal she just sits and wants more. And she can't be that > hungry right after a meal. > > Hope to get this straightened out soon. Is there always something?!!! > > Also, your approach with the school staff is a positive one. Because, > is in their hands all day and you want it good for him. > If they feel negatively about the situation it is bound to reflect in > their care. Even if they do not want it to. When I taught I saw > parents demanding and " advocating " that ended up alienating everyone. > In the end, what they got could have been accomplished diplomatically, > and with staff feeling much better about them and their child. I like > your approach. > > . > > lloydandleslie@... wrote: > , > We noticed that with too and I wonder if the additional > carbs > than lessens their ketosis makes them more hungry and thus more > irritable. > Just wondering??? > > Hope things get better > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 16, 2004 Report Share Posted November 16, 2004 Dear You are the only one that has ever addressed this issue, that I recall. I wonder if she will ever leave the kitchen once she is off the diet! She wants wants wants. I have seen her wild and weird behavior diminish some since on the higher ratio. She was a bit more manageable today, her second day on 2.5:1. When her ketones were high all the time she didn't want to eat, so I may just have to go higher and then manage them at nightime when they look like they may become a problem. How fast did you wean ? If I recall, she was on the diet for a long time, too. . mmc@... wrote: well you're describing, or have described, .....even now off the diet for a few months there is a definite food obsession wrote: > Dear > > It is worsening and she is just obsessed with food and her behavior is > just horrid. She has always been a dear little girl. Very sweet. > She is delayed, but busy and productive. No more. She lights from > one thing to another, and is nasty! > > I am upping the ratio to 2.5, knowing I can always give her some extra > carbs if the ketosis goes to high. If that doesn't work, I will up it > again in a couple of weeks. This behavioral stuff is CRAZY. I had > never heard of it before. Maybe it is real hunger, but when she > finishes a meal she just sits and wants more. And she can't be that > hungry right after a meal. > > Hope to get this straightened out soon. Is there always something?!!! > > Also, your approach with the school staff is a positive one. Because, > is in their hands all day and you want it good for him. > If they feel negatively about the situation it is bound to reflect in > their care. Even if they do not want it to. When I taught I saw > parents demanding and " advocating " that ended up alienating everyone. > In the end, what they got could have been accomplished diplomatically, > and with staff feeling much better about them and their child. I like > your approach. > > . > > lloydandleslie@... wrote: > , > We noticed that with too and I wonder if the additional > carbs > than lessens their ketosis makes them more hungry and thus more > irritable. > Just wondering??? > > Hope things get better > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 17, 2004 Report Share Posted November 17, 2004 Are you trying to wean or just lowering ratio to lower ketones a bit? Sorry, I have long ago given up trying to keep up with everyone......esp since we just had 36 hrs without power for our first snow storm, mass delete time .But I am glad I caught this one Jess was on diet 6.5 yrs (but whose counting? We started wean first of June and by end of July she was supposedly off the diet (as far as dietican was concerned). But even wihtout weighing I kept her fairly limited for August. Loosened up a little every week. Then at end of August send she could eat anything but tried to keep the sugar away. That lasted for all of two weeks.........she wasn't just champing at the bit, she was eating it! LOL I am still trying to push her more to healthier, sometimes gently, sometimes with a violent shove! I am concerned about her weight gain, told neuro in August I was afraid of eating disorders coming off the diet after so long. He told me to call him end of November with a current weight and height and if there was a problem they would have to " give us some help " . I assume he is talking about a referral back to the dietican..........told Jess she might have to go on a different kind of diet, she didn't like that! Well for what its worth, the behaviour did improve after a while, even the compulsviely wanting to eat has gotten better than it was. Good luck, let me know what you are up to wrote: > Dear > > You are the only one that has ever addressed this issue, that I > recall. I wonder if she will ever leave the kitchen once she is off > the diet! She wants wants wants. > > I have seen her wild and weird behavior diminish some since on the > higher ratio. She was a bit more manageable today, her second day on > 2.5:1. When her ketones were high all the time she didn't want to > eat, so I may just have to go higher and then manage them at nightime > when they look like they may become a problem. > > How fast did you wean ? If I recall, she was on the diet for a > long time, too. > > . > > mmc@... wrote: > well you're describing, or have described, .....even now off > the > diet for a few months there is a definite food obsession > > > wrote: > > > Dear > > > > It is worsening and she is just obsessed with food and her behavior > is > > just horrid. She has always been a dear little girl. Very sweet. > > She is delayed, but busy and productive. No more. She lights from > > one thing to another, and is nasty! > > > > I am upping the ratio to 2.5, knowing I can always give her some > extra > > carbs if the ketosis goes to high. If that doesn't work, I will up > it > > again in a couple of weeks. This behavioral stuff is CRAZY. I had > > never heard of it before. Maybe it is real hunger, but when she > > finishes a meal she just sits and wants more. And she can't be that > > > hungry right after a meal. > > > > Hope to get this straightened out soon. Is there always > something?!!! > > > > Also, your approach with the school staff is a positive one. > Because, > > is in their hands all day and you want it good for him. > > If they feel negatively about the situation it is bound to reflect > in > > their care. Even if they do not want it to. When I taught I saw > > parents demanding and " advocating " that ended up alienating > everyone. > > In the end, what they got could have been accomplished > diplomatically, > > and with staff feeling much better about them and their child. I > like > > your approach. > > > > . > > > > lloydandleslie@... wrote: > > , > > We noticed that with too and I wonder if the additional > > carbs > > than lessens their ketosis makes them more hungry and thus more > > irritable. > > Just wondering??? > > > > Hope things get better > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 17, 2004 Report Share Posted November 17, 2004 Dear Whoa...........6.5 years!!! No wonder she wants to eat! just produces ketones so easily and high ones were a problem so I have kept lowering her ratio. However, the behavior got so rank that I have her back up to 2.5:1 and may go a bit higher, as with high ketones the advantage is that she is not hungry. And, apple slices will bring it down if it goes too crazy high. Honestly, , how did you do it for over six years! And how did Jess do it! That is something. Did she reach seizure free goal? Is she doing fine off of the diet? Oh, my. That girl deserves a lot of credit, as do you! Best........, 's mumma (ketokid since May 04 and no seizures for 1.5 mos.) mmc@... wrote: Are you trying to wean or just lowering ratio to lower ketones a bit? Sorry, I have long ago given up trying to keep up with everyone......esp since we just had 36 hrs without power for our first snow storm, mass delete time .But I am glad I caught this one Jess was on diet 6.5 yrs (but whose counting? We started wean first of June and by end of July she was supposedly off the diet (as far as dietican was concerned). But even wihtout weighing I kept her fairly limited for August. Loosened up a little every week. Then at end of August send she could eat anything but tried to keep the sugar away. That lasted for all of two weeks.........she wasn't just champing at the bit, she was eating it! LOL I am still trying to push her more to healthier, sometimes gently, sometimes with a violent shove! I am concerned about her weight gain, told neuro in August I was afraid of eating disorders coming off the diet after so long. He told me to call him end of November with a current weight and height and if there was a problem they would have to " give us some help " . I assume he is talking about a referral back to the dietican..........told Jess she might have to go on a different kind of diet, she didn't like that! Well for what its worth, the behaviour did improve after a while, even the compulsviely wanting to eat has gotten better than it was. Good luck, let me know what you are up to wrote: > Dear > > You are the only one that has ever addressed this issue, that I > recall. I wonder if she will ever leave the kitchen once she is off > the diet! She wants wants wants. > > I have seen her wild and weird behavior diminish some since on the > higher ratio. She was a bit more manageable today, her second day on > 2.5:1. When her ketones were high all the time she didn't want to > eat, so I may just have to go higher and then manage them at nightime > when they look like they may become a problem. > > How fast did you wean ? If I recall, she was on the diet for a > long time, too. > > . > > mmc@... wrote: > well you're describing, or have described, .....even now off > the > diet for a few months there is a definite food obsession > > > wrote: > > > Dear > > > > It is worsening and she is just obsessed with food and her behavior > is > > just horrid. She has always been a dear little girl. Very sweet. > > She is delayed, but busy and productive. No more. She lights from > > one thing to another, and is nasty! > > > > I am upping the ratio to 2.5, knowing I can always give her some > extra > > carbs if the ketosis goes to high. If that doesn't work, I will up > it > > again in a couple of weeks. This behavioral stuff is CRAZY. I had > > never heard of it before. Maybe it is real hunger, but when she > > finishes a meal she just sits and wants more. And she can't be that > > > hungry right after a meal. > > > > Hope to get this straightened out soon. Is there always > something?!!! > > > > Also, your approach with the school staff is a positive one. > Because, > > is in their hands all day and you want it good for him. > > If they feel negatively about the situation it is bound to reflect > in > > their care. Even if they do not want it to. When I taught I saw > > parents demanding and " advocating " that ended up alienating > everyone. > > In the end, what they got could have been accomplished > diplomatically, > > and with staff feeling much better about them and their child. I > like > > your approach. > > > > . > > > > lloydandleslie@... wrote: > > , > > We noticed that with too and I wonder if the additional > > carbs > > than lessens their ketosis makes them more hungry and thus more > > irritable. > > Just wondering??? > > > > Hope things get better > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 18, 2004 Report Share Posted November 18, 2004 Hi , this will be Kristan's second MRI too. I am a bit worried about the sedation, but if they use one that they used on her when they did her ABR test (hearing test) then she should be ok, she never reacted to it. Kristan always takes forever in waking up when sedated, she is sound asleep and we are glad as she gets rest, but the hospital staff tend to freak out as they say she should wake up a half hour after the procedure and I always tell them she won't be waking up in a half hour, she will probably be out for two hours at least. I'll tell them when we get to Children's next month, but they won't listen. Yes, I am going to take Kristan to the chiropractor, it's worth a shot. I haven't even discussed it with her neuro, but maybe I'll run it by her gp since I will be seeing her today. I have a consult appointment on Monday, but may have to cancel, now Kristan has come down with a cold again! I don't understand how she caught it, I always keep her well bundled when we go out, maybe she caught something from another child, but no one has been sick that I can tell. I am starting to wonder if her immune system is really weak, do kids who have seizures have weak immune systems? She is not taking any fluids this morning and only had 6 oz of her formula yesterday, that was all she had all day! I resorted to syringing in 60 ml of water this morning and then another 60 ml of her formula a little while ago. She had 94 seizures yesterday! Probably more as I am sure we missed some. So far today she has had 30 seizures. She is able to get some rest in between, sleeping for an hour or two at a time. I am taking her to the doctor at noon today to make sure it doesn't turn into pneumonia. She has had a slight temperature and thankfully it keeps coming down with the Tempra. Chest sounds clear so far and she has a bit of a cough. So, the saga continues.... I hope is coping well. Satnam > > Dear Satnam > > > > We are getting ready for winter and had some things to do in the > yard today, and that is her happiest place - outside, so it was a > great time. She came in hungry and tired, and fell asleep almost > immediately. I think this lower ratio just is making her hungry and > if the 2.3:1 doesn't do it, I will go back to the 2.5:1 and just give > her apple slices that she loves to bring the ketones down if I see > them climbing too high. I usually check ketones quite a bit, and > will just need to make sure I am. > > > > Glad Kristan is on the mend. And, that she is not dehydrating. > Does she usually love her bottle? drank on a bottle until she > was three. She was so sick, and it was the only way I could get > nourishment into her. In the end, before the med wean, she wasn't > even keen on the bottle. > > > > Too bad Kristan can't tolerate eggs. The custards are so smooth > and go down so easily. They have sure been a big hit with of > late. > > > > . > > > > > > > > > " 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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