Guest guest Posted December 23, 2003 Report Share Posted December 23, 2003 Glenna, It was 3 years on Oct. 31. We are continuing to wean. I am making changes about every 2 weeks if everything is okay. I went up in calories by 50 or in ratio by 0.5. With each ratio change I also increased protein slightly so that both went up. We are now at 1:1 with 880 calories. The biggest problem so far was going up in calories to 930. This caused lots more seizures. After 10 days or so, we dropped back to 880 and everything settled down. After increasing vegetables, we then started adding fruit. She still has ketones. I guess there are many reasons to start weaning. We were successful in getting seizures reduced by 75% and weaning her AED medication. The seizures are short and there is immediate recovery. Except for illness and weaning medications, seizure control has been good. We pretty much tried all combinations to eliminate seizures; ratio up to 5:1, more meals throughout the day, MCT oil, different oils. We didn't do blood glucose measurements. This might have given us more information to further fine tune, but I am doubtful. Our daughter is severely disabled and wouldn't understand the finger pricks. I just didn't have the will to try it. We had increased control from the first day on the diet, with 3 seizures a day; one in the morning, one at 10:30 am and one at 2:30 pm. I just didn't think that we could improve on the control. The diet is severe and may be harmful to our daughter's health. No one really knows. We are using good supplements, but there are risks to the diet. Fortunately we haven't seen anything too serious. She likes to eat and would like to return to a more normal diet. (My thoughts about what she may be thinking.) Oh yes. The diet can be a chore. Although we are weaning, we may have a long way to go. I will continue increasing ratio and protein until we are at a normal level; not sure yet what that is. Increasing calories may be more difficult based on previous experience. We may be on the diet for a lot longer. Will keep you informed. Good luck, Bill jgmsteele@... wrote: > Hi Bill, > I've been keeping up with your daughter through your posts to > others, but I don't remember reading anything about how long she has > been on the diet (I probably just missed it) Are you still weaning? > How quickly are you going? What increments? How is she taking the > weans? What made you decide it was time to wean? > We appreciate all the help you've been to us, and I know you've > given lots of good advice to others. You sound like you are truly > dedicated to the diet, so I'm just curious about your decision to > wean. How did you know it was time? Your thoughts/reasoning will be > helpful to all of us, I know. We are in the process of switching to > a new neurologist/keto team, so I have very high hopes that they can > help us get the diet back on track. If in the end we can't, I want > to be realistic about our options. > > Thanks, > > Glenna Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 24, 2003 Report Share Posted December 24, 2003 Thanks, Bill, for your information. I hope things continue to go well for your daughter, and with the weaning process. I'm glad the diet has been so helpful for her. Happy Holidays! Glenna Quote Link to comment Share on other sites More sharing options...
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