Guest guest Posted March 16, 2004 Report Share Posted March 16, 2004 My daughter uses MCT oil. We get it through our local pharmacy (Rite Aid). I don't think we have ever had a problem getting it. It does require a prescription. We are unable to get insurance to pay for it, they call it a medical food. It is not really too expensive, though. I think we pay about $15 a month for it (our pharmacy divides the bottle to monthly doses). How did they tell you to give it to her? We had alot of problems giving it in food. Grace would refuse the food which the oil was in. Eventually we had to get a g tube for her, primarily for medicines. Also I would start the doses a little slower or divide them up, Grace had upset stomachs from it until she got used to it. The manufacturer is Mead and MCT oil is on the website. Maybe you can find some info on a back order or something. Also I would try going to a hospital pharmacy or a larger national pharmacy, sometimes they are able to get a hold of things faster. Best of luck, if you have any more questions feel free to email me. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 16, 2004 Report Share Posted March 16, 2004 My daughter uses MCT oil. We get it through our local pharmacy (Rite Aid). I don't think we have ever had a problem getting it. It does require a prescription. We are unable to get insurance to pay for it, they call it a medical food. It is not really too expensive, though. I think we pay about $15 a month for it (our pharmacy divides the bottle to monthly doses). How did they tell you to give it to her? We had alot of problems giving it in food. Grace would refuse the food which the oil was in. Eventually we had to get a g tube for her, primarily for medicines. Also I would start the doses a little slower or divide them up, Grace had upset stomachs from it until she got used to it. The manufacturer is Mead and MCT oil is on the website. Maybe you can find some info on a back order or something. Also I would try going to a hospital pharmacy or a larger national pharmacy, sometimes they are able to get a hold of things faster. Best of luck, if you have any more questions feel free to email me. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 16, 2004 Report Share Posted March 16, 2004 My daughter uses MCT oil. We get it through our local pharmacy (Rite Aid). I don't think we have ever had a problem getting it. It does require a prescription. We are unable to get insurance to pay for it, they call it a medical food. It is not really too expensive, though. I think we pay about $15 a month for it (our pharmacy divides the bottle to monthly doses). How did they tell you to give it to her? We had alot of problems giving it in food. Grace would refuse the food which the oil was in. Eventually we had to get a g tube for her, primarily for medicines. Also I would start the doses a little slower or divide them up, Grace had upset stomachs from it until she got used to it. The manufacturer is Mead and MCT oil is on the website. Maybe you can find some info on a back order or something. Also I would try going to a hospital pharmacy or a larger national pharmacy, sometimes they are able to get a hold of things faster. Best of luck, if you have any more questions feel free to email me. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 16, 2004 Report Share Posted March 16, 2004 Yes, it is safe for mito kids. Secondly Grace gained a ton of weight while using the oil. You may need to flush the tube with more fluid than before, I notice it sticking to the tube a little bit. If she is tube fed I would put the oil in the line before the feed starts, this way you will know she is getting the full amount. Hopefully your insurance will pay, since she is tube fed already. Grace is not on a dose that high so this could get expensive out of pocket. Best of luck to you. Hopefully it is a good thing for her. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 16, 2004 Report Share Posted March 16, 2004 Yes, it is safe for mito kids. Secondly Grace gained a ton of weight while using the oil. You may need to flush the tube with more fluid than before, I notice it sticking to the tube a little bit. If she is tube fed I would put the oil in the line before the feed starts, this way you will know she is getting the full amount. Hopefully your insurance will pay, since she is tube fed already. Grace is not on a dose that high so this could get expensive out of pocket. Best of luck to you. Hopefully it is a good thing for her. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 16, 2004 Report Share Posted March 16, 2004 Yes, it is safe for mito kids. Secondly Grace gained a ton of weight while using the oil. You may need to flush the tube with more fluid than before, I notice it sticking to the tube a little bit. If she is tube fed I would put the oil in the line before the feed starts, this way you will know she is getting the full amount. Hopefully your insurance will pay, since she is tube fed already. Grace is not on a dose that high so this could get expensive out of pocket. Best of luck to you. Hopefully it is a good thing for her. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 16, 2004 Report Share Posted March 16, 2004 hi, my daughter gets the mct oil through her formula: Peptamen jr. made by nestle. It states: " The customized lipid blend contains an MCT/LCT ratio of 60:40 to enhance absorption and to meet essential fatty acid recommendations for children. " Our insurance pays for it and we get it through a local office: American Home Patient. Bethany mom to brennan 7, palmer & anna grace (leighs) 4 > Adeline's Dr Appointment yesterday went okay, but I was extremelly nervous. > I am used to having the problems with her disease, but sometimes I feel like > there is to much going on with her, and one more thing added to her already > many problems is too many. Anyways they said that she is expelling 4 times > the normal amount of protein. They want to put her on MCT Oil, to see if she > will absorb some of that. They will repeat the test in 30 days and if she is > still not absorbing the protein we will be doing a biopsy of her intestines. > Hopefully the Oil works. > > Hello, do any of your kids take MCT Oil? Where do you buy it? Our local > pharmacy's can not get from the supplier, they are out. > > Hi-D Payton Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 16, 2004 Report Share Posted March 16, 2004 hi, my daughter gets the mct oil through her formula: Peptamen jr. made by nestle. It states: " The customized lipid blend contains an MCT/LCT ratio of 60:40 to enhance absorption and to meet essential fatty acid recommendations for children. " Our insurance pays for it and we get it through a local office: American Home Patient. Bethany mom to brennan 7, palmer & anna grace (leighs) 4 > Adeline's Dr Appointment yesterday went okay, but I was extremelly nervous. > I am used to having the problems with her disease, but sometimes I feel like > there is to much going on with her, and one more thing added to her already > many problems is too many. Anyways they said that she is expelling 4 times > the normal amount of protein. They want to put her on MCT Oil, to see if she > will absorb some of that. They will repeat the test in 30 days and if she is > still not absorbing the protein we will be doing a biopsy of her intestines. > Hopefully the Oil works. > > Hello, do any of your kids take MCT Oil? Where do you buy it? Our local > pharmacy's can not get from the supplier, they are out. > > Hi-D Payton Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 16, 2004 Report Share Posted March 16, 2004 hi, my daughter gets the mct oil through her formula: Peptamen jr. made by nestle. It states: " The customized lipid blend contains an MCT/LCT ratio of 60:40 to enhance absorption and to meet essential fatty acid recommendations for children. " Our insurance pays for it and we get it through a local office: American Home Patient. Bethany mom to brennan 7, palmer & anna grace (leighs) 4 > Adeline's Dr Appointment yesterday went okay, but I was extremelly nervous. > I am used to having the problems with her disease, but sometimes I feel like > there is to much going on with her, and one more thing added to her already > many problems is too many. Anyways they said that she is expelling 4 times > the normal amount of protein. They want to put her on MCT Oil, to see if she > will absorb some of that. They will repeat the test in 30 days and if she is > still not absorbing the protein we will be doing a biopsy of her intestines. > Hopefully the Oil works. > > Hello, do any of your kids take MCT Oil? Where do you buy it? Our local > pharmacy's can not get from the supplier, they are out. > > Hi-D Payton Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 16, 2004 Report Share Posted March 16, 2004 To , How did you get your daughters drs to approve her getting the g-tube for meds? Mine does not know if that is reason enough for my daughter to get a g-tube? Primarily just for meds. She refuses to take any of her mito meds by mouth and even antibiotics and Tylenol re a joke to get down her. Feel free to privately email me at djvanaman@... thanks in advance for any info. Debbie...mommy to Jaleigh mito affected Re: MCT Oil My daughter uses MCT oil. We get it through our local pharmacy (Rite Aid). I don't think we have ever had a problem getting it. It does require a prescription. We are unable to get insurance to pay for it, they call it a medical food. It is not really too expensive, though. I think we pay about $15 a month for it (our pharmacy divides the bottle to monthly doses). How did they tell you to give it to her? We had alot of problems giving it in food. Grace would refuse the food which the oil was in. Eventually we had to get a g tube for her, primarily for medicines. Also I would start the doses a little slower or divide them up, Grace had upset stomachs from it until she got used to it. The manufacturer is Mead and MCT oil is on the website. Maybe you can find some info on a back order or something. Also I would try going to a hospital pharmacy or a larger national pharmacy, sometimes they ! are able to get a hold of things faster. Best of luck, if you have any more questions feel free to email me. Please contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 16, 2004 Report Share Posted March 16, 2004 Adeline is g-tube fed only so at least I do not have to battle with it not tasting good. They want her to take 10cc 6 times a day. The reason I am asking so many questions is that one, she has lost 5 lbs in the last 3 months and still loosing. Second the dr. doesn't sound confident when we keep switching her diet and how to treat her other problems. I just wanted to make sure this was okay for mito kids before giving it to her. Thank you for all of your help. Hi-D Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 16, 2004 Report Share Posted March 16, 2004 Adeline is g-tube fed only so at least I do not have to battle with it not tasting good. They want her to take 10cc 6 times a day. The reason I am asking so many questions is that one, she has lost 5 lbs in the last 3 months and still loosing. Second the dr. doesn't sound confident when we keep switching her diet and how to treat her other problems. I just wanted to make sure this was okay for mito kids before giving it to her. Thank you for all of your help. Hi-D Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 16, 2004 Report Share Posted March 16, 2004 Adeline is g-tube fed only so at least I do not have to battle with it not tasting good. They want her to take 10cc 6 times a day. The reason I am asking so many questions is that one, she has lost 5 lbs in the last 3 months and still loosing. Second the dr. doesn't sound confident when we keep switching her diet and how to treat her other problems. I just wanted to make sure this was okay for mito kids before giving it to her. Thank you for all of your help. Hi-D Quote Link to comment Share on other sites More sharing options...
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