Guest guest Posted June 28, 2004 Report Share Posted June 28, 2004 Hi all, Does any one out there use MCT oil in their meal planning's? Our dietician is recommending it for Stella to get her into higher ketosis. She's at a 5.1 BHB. Strangely enough, this am when I checked her urine the stick was very peculiar. The leucyolytes was high, the protein a 3 and the red blood was lime green showing hemoglobin. Has anyone else experience this? As she is on lamictal and Diamox and diazepam too I am always worried about kidney stones. Yesterday started of terrible, TC seizure during her am sleep, then she was fine other than being very cranky until 2pm then it was ever 1/2 hour or so of TC seizures lasting upwards of 3 mins (short for her) though the night even after giving her the diastat. So she didn't get her evening meal or her evening meds, due to seizures and sleeping, this am she is back in her zombie world she used to be in all the time when she was seizing so frequently. She ate about 1/2 her breakfast and is refusing to take her meds. AAAHHHH just when I thought she was on a winning streak w/ no seizures boom it's a whopper!!! -- -mom to stella, 5years old, started keto diet May 10th 2004 still waiting to be seizure free. Also on Lamictal, diazapem and Diamox. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 28, 2004 Report Share Posted June 28, 2004 I do occasionally use MCT oil for but not on an every day basis. I calculate it in once a week or so, expecially when he isn't regular at all. Sounds like Stella is having issues with possible stones. is on zonegran which also has a higher likelyhood for stones and I keep a good eye on it. I'd take her in, but then I'm a worry wort soo take it with the salt it's intended. Ally mct oil Hi all, Does any one out there use MCT oil in their meal planning's? Our dietician is recommending it for Stella to get her into higher ketosis. She's at a 5.1 BHB. Strangely enough, this am when I checked her urine the stick was very peculiar. The leucyolytes was high, the protein a 3 and the red blood was lime green showing hemoglobin. Has anyone else experience this? As she is on lamictal and Diamox and diazepam too I am always worried about kidney stones. Yesterday started of terrible, TC seizure during her am sleep, then she was fine other than being very cranky until 2pm then it was ever 1/2 hour or so of TC seizures lasting upwards of 3 mins (short for her) though the night even after giving her the diastat. So she didn't get her evening meal or her evening meds, due to seizures and sleeping, this am she is back in her zombie world she used to be in all the time when she was seizing so frequently. She ate about 1/2 her breakfast and is refusing to take her meds. AAAHHHH just when I thought she was on a winning streak w/ no seizures boom it's a whopper!!! -- -mom to stella, 5years old, started keto diet May 10th 2004 still waiting to be seizure free. Also on Lamictal, diazapem and Diamox. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 28, 2004 Report Share Posted June 28, 2004 I would say either UTI or possible stone issue. Either way a sample should be taken to the lab. But a word to the wise, make sure you check your sample with the stix before taking it in. If nothing shows, don't bother. Been there, done that , 's mom Allyson Kulinski wrote: > I do occasionally use MCT oil for but not on an every day > basis. I calculate it in once a week or so, expecially when he isn't > regular at all. Sounds like Stella is having issues with possible > stones. is on zonegran which also has a higher likelyhood for > stones and I keep a good eye on it. I'd take her in, but then I'm a > worry wort soo take it with the salt it's intended. > > Ally > mct oil > > > Hi all, > Does any one out there use MCT oil in their meal planning's? Our > dietician > is recommending it for Stella to get her into higher ketosis. She's > at a > 5.1 BHB. > Strangely enough, this am when I checked her urine the stick was > very > peculiar. The leucyolytes was high, the protein a 3 and the red > blood was > lime green showing hemoglobin. Has anyone else experience this? As > she is > on lamictal and Diamox and diazepam too I am always worried about > kidney > stones. > Yesterday started of terrible, TC seizure during her am sleep, then > she was > fine other than being very cranky until 2pm then it was ever 1/2 > hour or so > of TC seizures lasting upwards of 3 mins (short for her) though the > night > even after giving her the diastat. > So she didn't get her evening meal or her evening meds, due to > seizures and > sleeping, this am she is back in her zombie world she used to be in > all the > time when she was seizing so frequently. She ate about 1/2 her > breakfast > and is refusing to take her meds. AAAHHHH just when I thought she > was on a > winning streak w/ no seizures boom it's a whopper!!! > > -- > -mom to stella, 5years old, started keto diet May 10th 2004 > still > waiting to be seizure free. Also on Lamictal, diazapem and Diamox. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 29, 2004 Report Share Posted June 29, 2004 Hi , I use MCT oil for Kristan. It hasn't helped her to get into higher ketosis but it helps with her bowel movements. Hope Stella has better days. Satnam, mom to Kristan, 19 months Keto kid since August 2003 > Hi all, > Does any one out there use MCT oil in their meal planning's? Our dietician > is recommending it for Stella to get her into higher ketosis. She's at a > 5.1 BHB. > Strangely enough, this am when I checked her urine the stick was very > peculiar. The leucyolytes was high, the protein a 3 and the red blood was > lime green showing hemoglobin. Has anyone else experience this? As she is > on lamictal and Diamox and diazepam too I am always worried about kidney > stones. > Yesterday started of terrible, TC seizure during her am sleep, then she was > fine other than being very cranky until 2pm then it was ever 1/2 hour or so > of TC seizures lasting upwards of 3 mins (short for her) though the night > even after giving her the diastat. > So she didn't get her evening meal or her evening meds, due to seizures and > sleeping, this am she is back in her zombie world she used to be in all the > time when she was seizing so frequently. She ate about 1/2 her breakfast > and is refusing to take her meds. AAAHHHH just when I thought she was on a > winning streak w/ no seizures boom it's a whopper!!! > > -- > -mom to stella, 5years old, started keto diet May 10th 2004 still > waiting to be seizure free. Also on Lamictal, diazapem and Diamox. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 29, 2004 Report Share Posted June 29, 2004 Could you tell me what's MTC oil? Thanks Carolyn Re: mct oil Hi , I use MCT oil for Kristan. It hasn't helped her to get into higher ketosis but it helps with her bowel movements. Hope Stella has better days. Satnam, mom to Kristan, 19 months Keto kid since August 2003 > Hi all, > Does any one out there use MCT oil in their meal planning's? Our dietician > is recommending it for Stella to get her into higher ketosis. She's at a > 5.1 BHB. > Strangely enough, this am when I checked her urine the stick was very > peculiar. The leucyolytes was high, the protein a 3 and the red blood was > lime green showing hemoglobin. Has anyone else experience this? As she is > on lamictal and Diamox and diazepam too I am always worried about kidney > stones. > Yesterday started of terrible, TC seizure during her am sleep, then she was > fine other than being very cranky until 2pm then it was ever 1/2 hour or so > of TC seizures lasting upwards of 3 mins (short for her) though the night > even after giving her the diastat. > So she didn't get her evening meal or her evening meds, due to seizures and > sleeping, this am she is back in her zombie world she used to be in all the > time when she was seizing so frequently. She ate about 1/2 her breakfast > and is refusing to take her meds. AAAHHHH just when I thought she was on a > winning streak w/ no seizures boom it's a whopper!!! > > -- > -mom to stella, 5years old, started keto diet May 10th 2004 still > waiting to be seizure free. Also on Lamictal, diazapem and Diamox. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 13, 2004 Report Share Posted July 13, 2004 Nicola, it's been ages since you sent me this email, i'm curious if you use the mct in replace of regular oil, and how much do you use at a time? How are you calculating it? Our dietician said to take 5g out of the oil in her meal plan and use the MCT in place of it. However when I look up MCT oil it seems to be lower in fat than say olive oil, would that not alter her ratio? I have been using flax oil and coconut oil too which I know are natural MCT oils, but now we are using the MCT oil from the pharmacy. -- -mom to stella, 5years old, started keto diet May 10th 2004 still waiting to be seizure free. Also on Lamictal, diazapem and Diamox. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 7, 2004 Report Share Posted October 7, 2004 Hi , my daughter Kristan gets MCT oil in her bottles/meals. She was getting 28 grams a day and now gets 20 grams a day. We added it in to see if it would raise her ketones, it didn't, but it did help with her constipation. We still give her the MCT oil and her dietitian has lowered it a bit, but it is mainly used as one of her fats in the diet now. We didn't have any increased seizures from adding in the oil either. I hear what you are saying about wanting to try everything with the diet. I've been there and am there. We are currently weaning Kristan from the diet and we believe we have truly tried everything we can with the diet with the fine tuning. She has good and bad days on the diet and with her having up to 70 seizures on the diet, we want to see what she will be like off the diet, if she is the same, then the diet isn't worth it for us. I want to try a naturopath after Kristan is off the diet. If we find that she is getting worse, we are definitely putting her back on the diet and we also decided if we see daytime seizures when she is awake, she's going back on the diet, I think the diet has eliminated the daytime seizures for Kristan. Right now she is on a 3:1 ratio, it's only been 3 days and her seizures have come down, so maybe this ratio might be the answer, only time will tell. As we are going down with the ratios I am hoping the seizures keep going down and if she is only having a few, I just might leave her at whatever ratio she is at. We have been on the diet since August 2003 so it has been a little over a year. Please try to commit for a year if you can and know that fine tuning takes time. Stick with the diet and keep weaning her off the diet, you will probably have different results with her being med free. We stopped all meds for Kristan about a week before she started the diet. We had enough of the drugs, they just made her worse and kept her sedated. I'm in Canada and I don't know how it works in the States, but why do you need the final ok to stop a drug from your doctor when you know it isn't helping your child. I would just tell him you want to stop the drug and give you a weaning schedule. I know it is hard. Good luck. Satnam, mom to Kristan, 22 months Keto kid since August 2003 and currently weaning from the diet > > I just wanted to share that we are adding MCT oil to our > daughters diet starting tomorrow. She will be getting 30 grams > a day. > > I feel as though this is our last ditch effort with the diet. I don't > want to give up because I still feel we haven't given it its best > shot. We have always felt that we would never really now how > the diet is working until all meds werre gone. It has been a > constant fight with weaning the phenobarbital with the doctor. > Still jumping through hoops to make him happy enough to > consider. It has been an on and off again with weaning since > April, but never getting the final okay. It has come down to that > my husband has to communicate with the dr because I am to > upset to have a productive conversation with him. > > Sorry this is so long. If anyone has good or bad experience with > MCT oil please share with me. > > ~ > mother to 4 (almost 5) started diet in January. Quote Link to comment Share on other sites More sharing options...
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