Guest guest Posted July 24, 2003 Report Share Posted July 24, 2003 Hi ALL We were very happy when we got first answers. Thanks too all. Let we write little more about our Maruša. As you know she is 15. Before we started with keto diet she had all kinds of seizures through all day since her first birthday. Because of all heavy seizures she has hard brain injury. She is on the level of 2 years. She can walk but she talks very little (only few words). Now she is on low level of lamictal and phenobarbiton. We started with diet at 26 th may this year. We started quite well in hospital: the morning seizures disappeared, hard seizures become were not so strong and Maruša was more friendly, alert and more aware. She had 42,5 kilos and we started with 960 kcal. When she lost 10 % of her weight in one month, we slowly increased her food on 1.660 k cal. But it looks that we lost ketones and lot of her problems start again. It is truth, she never had high and stable ketones. She pees only once a day so is difficult to measure ketones. Does somebody have any idea how to get ketenes back and what do you think about suitable level of food (kcal) ? Breda and Rado Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 24, 2003 Report Share Posted July 24, 2003 Level of calories is quite variable among people. The only way to get it correct is to fine tune. Vary calories up or down by 50 or 100 calories a day and measure weight gain or loss and ketones for 2 weeks. Try to keep detailed records of everything. I would guess that calories are too high now, but you will have to determine that. It may take a while to get the right amount. Bill breda.kavcic wrote: > Hi ALL > > We were very happy when we got first answers. Thanks too all. Let we > write little more about our Maruša. As you know she is 15. Before we > started with keto diet she had all kinds of seizures through all day > since her first birthday. Because of all heavy seizures she has hard > brain injury. She is on the level of 2 years. She can walk but she talks > very little (only few words). Now she is on low level of lamictal and > phenobarbiton. > > We started with diet at 26 th may this year. We started quite well in > hospital: the morning seizures disappeared, hard seizures become were > not so strong and Maruša was more friendly, alert and more aware. She > had 42,5 kilos and we started with 960 kcal. When she lost 10 % of her > weight in one month, we slowly increased her food on 1.660 k cal. But it > looks that we lost ketones and lot of her problems start again. It is > truth, she never had high and stable ketones. She pees only once a day > so is difficult to measure ketones. > > Does somebody have any idea how to get ketenes back and what do you > think about suitable level of food (kcal) ? > > Breda and Rado > > > > " 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 July 24, 2003 Report Share Posted July 24, 2003 Rado, what ratio is Marusa on? Can you increase it to see whether the ketones return to a higher level? Increasing the calories by 700 a day was a big difference all at once.My daughter is 18yo, weighs 38kgs and is on 1700cals a day. She is not mobile but is very active , never sitting still in her wheelchair. Deciding what to change is a difficult decision and I have learnt you have to be patient and change only one thing at a time and wait for a while [maybe 2 weeks]until you know whether that has helped or not. It sounds as though the diet is going to work for Marusa but like Asha it will have to be changed often to keep it working. Leita. > Hi ALL > > We were very happy when we got first answers. Thanks too all. Let we > write little more about our Maruša. As you know she is 15. Before we > started with keto diet she had all kinds of seizures through all day > since her first birthday. Because of all heavy seizures she has hard > brain injury. She is on the level of 2 years. She can walk but she talks > very little (only few words). Now she is on low level of lamictal and > phenobarbiton. > > We started with diet at 26 th may this year. We started quite well in > hospital: the morning seizures disappeared, hard seizures become were > not so strong and Maruša was more friendly, alert and more aware. She > had 42,5 kilos and we started with 960 kcal. When she lost 10 % of her > weight in one month, we slowly increased her food on 1.660 k cal. But it > looks that we lost ketones and lot of her problems start again. It is > truth, she never had high and stable ketones. She pees only once a day > so is difficult to measure ketones. > > Does somebody have any idea how to get ketenes back and what do you > think about suitable level of food (kcal) ? > > Breda and Rado Quote Link to comment Share on other sites More sharing options...
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