Guest guest Posted February 19, 2004 Report Share Posted February 19, 2004 Hello, Thanks for the info about Carnitor. Collin does use Carnitor now since being at Cleveland Clinic, but we aren't sure if it is helping or not. It is difficult to tell b/c he started it at the same time as other things. We would only know if we discontinue everything else and only give it. We definitely noticed a difference with q-10. We continue to give it b/c it is known to help in mito disorders. We don't know what specific mito he has, (he most closely fits into MELAS) just that it is a mito disorder so we do what is known to help. I feel the Carnitor probably does work better than generic carnitine though. What have other mito doctors recommended beyond COq10 and Carnitor? This group has been helpful for my husband and I in learning more about this disorder. Joni Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 19, 2004 Report Share Posted February 19, 2004 Hello, Thanks for the info about Carnitor. Collin does use Carnitor now since being at Cleveland Clinic, but we aren't sure if it is helping or not. It is difficult to tell b/c he started it at the same time as other things. We would only know if we discontinue everything else and only give it. We definitely noticed a difference with q-10. We continue to give it b/c it is known to help in mito disorders. We don't know what specific mito he has, (he most closely fits into MELAS) just that it is a mito disorder so we do what is known to help. I feel the Carnitor probably does work better than generic carnitine though. What have other mito doctors recommended beyond COq10 and Carnitor? This group has been helpful for my husband and I in learning more about this disorder. Joni Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 19, 2004 Report Share Posted February 19, 2004 Hello, Thanks for the info about Carnitor. Collin does use Carnitor now since being at Cleveland Clinic, but we aren't sure if it is helping or not. It is difficult to tell b/c he started it at the same time as other things. We would only know if we discontinue everything else and only give it. We definitely noticed a difference with q-10. We continue to give it b/c it is known to help in mito disorders. We don't know what specific mito he has, (he most closely fits into MELAS) just that it is a mito disorder so we do what is known to help. I feel the Carnitor probably does work better than generic carnitine though. What have other mito doctors recommended beyond COq10 and Carnitor? This group has been helpful for my husband and I in learning more about this disorder. Joni Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 18, 2004 Report Share Posted March 18, 2004 I always kept my Carnitor tablets in the cabinet and they were fine. Just take into consideration if you live in a warmer climate then maybe you should put them in the fridge. I've never taken the liquid so I can't comment on that. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 18, 2004 Report Share Posted March 18, 2004 I always kept my Carnitor tablets in the cabinet and they were fine. Just take into consideration if you live in a warmer climate then maybe you should put them in the fridge. I've never taken the liquid so I can't comment on that. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 18, 2004 Report Share Posted March 18, 2004 I always kept my Carnitor tablets in the cabinet and they were fine. Just take into consideration if you live in a warmer climate then maybe you should put them in the fridge. I've never taken the liquid so I can't comment on that. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 18, 2004 Report Share Posted March 18, 2004 We do the liquid and never knew to keep it in the frig. Thanks for sharing this. Do you think what I have is no good after sitting out? I keep it in a dark cabinet but we do live in Alabama where it is pretty warm. Thanks again for sharing this and have a great weekend! Horsley Carnitor By the way, some pharmacists may not tell you: refrigerate Carnitor!It breaks down at room temp. The tablets are far worse (they turn to foul smelling mush out of the air-tight foil or at room temp) but the liquid is best kept in the door of the fridge as well. KJDe-Arbra 's mom Please contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 18, 2004 Report Share Posted March 18, 2004 Depends how long it's been open if it's the liquid. Health food stores always refrigerate it. Pharmacies are schizophrenic (some do some don't even know what it is). The tablets go from nice hard compact pills to enormous soft moist mushy foul smelling things in a matter of hours, can't even pick them up they disintegrate -- and I live in Seattle where it is cool and damp year round. When we were in Florida she had the liquid and the pharmacy kept it refrigerated. Didn't smell right if it sat out. Supposed to be cherry. The kid noticed it too, like if I'd prepare it in her noon milk and send her to school with it and it sat out the milk wouldn't sour but the carnitor went yucky. Never ever warm it in the microwave either, like if you are mixing it in formula (I always did cos the kid hated the taste). Warm the milk or whatever first and add the carnitor at the last moment. I don't know if the broken down stuff is less effective it just smells rotten. Like aspirin that is old smells bad but probably still works I guess maybe not as well. Bad carnitor makes your child smell bad too (stool and sweat had a noxious odor) but rather than being dose related as they tell us you'll likely notice refrigerating it makes that go away. kj Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 18, 2004 Report Share Posted March 18, 2004 Depends how long it's been open if it's the liquid. Health food stores always refrigerate it. Pharmacies are schizophrenic (some do some don't even know what it is). The tablets go from nice hard compact pills to enormous soft moist mushy foul smelling things in a matter of hours, can't even pick them up they disintegrate -- and I live in Seattle where it is cool and damp year round. When we were in Florida she had the liquid and the pharmacy kept it refrigerated. Didn't smell right if it sat out. Supposed to be cherry. The kid noticed it too, like if I'd prepare it in her noon milk and send her to school with it and it sat out the milk wouldn't sour but the carnitor went yucky. Never ever warm it in the microwave either, like if you are mixing it in formula (I always did cos the kid hated the taste). Warm the milk or whatever first and add the carnitor at the last moment. I don't know if the broken down stuff is less effective it just smells rotten. Like aspirin that is old smells bad but probably still works I guess maybe not as well. Bad carnitor makes your child smell bad too (stool and sweat had a noxious odor) but rather than being dose related as they tell us you'll likely notice refrigerating it makes that go away. kj Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 18, 2004 Report Share Posted March 18, 2004 Depends how long it's been open if it's the liquid. Health food stores always refrigerate it. Pharmacies are schizophrenic (some do some don't even know what it is). The tablets go from nice hard compact pills to enormous soft moist mushy foul smelling things in a matter of hours, can't even pick them up they disintegrate -- and I live in Seattle where it is cool and damp year round. When we were in Florida she had the liquid and the pharmacy kept it refrigerated. Didn't smell right if it sat out. Supposed to be cherry. The kid noticed it too, like if I'd prepare it in her noon milk and send her to school with it and it sat out the milk wouldn't sour but the carnitor went yucky. Never ever warm it in the microwave either, like if you are mixing it in formula (I always did cos the kid hated the taste). Warm the milk or whatever first and add the carnitor at the last moment. I don't know if the broken down stuff is less effective it just smells rotten. Like aspirin that is old smells bad but probably still works I guess maybe not as well. Bad carnitor makes your child smell bad too (stool and sweat had a noxious odor) but rather than being dose related as they tell us you'll likely notice refrigerating it makes that go away. kj Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 18, 2004 Report Share Posted March 18, 2004 takes 3000mg daily. WOW!!! I never heard of anyone taking more than 1500. Are your 12 bottles vacuum or factory sealed when you get them? Looks like 1 bottle would last a little over 2 days. The unopened ones I'd think are OK, I'd refrigerate the one you open though. My pharmacist would put the syrup in a 16 ounce bottle 2 per month and it was marked on the side "refrigerate". Does your get side effects like upset stomach cramping or diarrhea from this? Mine had cramps if I didn't divide the doses throughout the day. We had the awful smelling sweat and stool for a long time until I began refrigerating it. Then too she grew physically and her 1300mg became proportionally different even though no dose change, and she breaks the scale at a whopping 102 pounds now at 5'2". If she isn't underweight was there some other reason you were told to give MCT oil? Mostly it is used for kids who can't gain weight. At 30 months De-Arbra weighed 14 pounds. I was accused of everything from starving her to neglecting her, etc. I wouldn't wish what we went through on anyone. Congrats on the good cardio workup. Mine has poor lung volumes as well, mostly from the scoli repaired at age 10: double curve 98 and 72 degrees and 23% lung capacity corrected with three rods to about 25 and 15 degrees and now max 50% lung capacity with BiPap at night. How are you managing lung problems? kj mom to De-arbra age 16 PS How are people coping with their children realizing they are "different" and wanting to be "like everyone else"? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 18, 2004 Report Share Posted March 18, 2004 takes 3000mg daily. WOW!!! I never heard of anyone taking more than 1500. Are your 12 bottles vacuum or factory sealed when you get them? Looks like 1 bottle would last a little over 2 days. The unopened ones I'd think are OK, I'd refrigerate the one you open though. My pharmacist would put the syrup in a 16 ounce bottle 2 per month and it was marked on the side "refrigerate". Does your get side effects like upset stomach cramping or diarrhea from this? Mine had cramps if I didn't divide the doses throughout the day. We had the awful smelling sweat and stool for a long time until I began refrigerating it. Then too she grew physically and her 1300mg became proportionally different even though no dose change, and she breaks the scale at a whopping 102 pounds now at 5'2". If she isn't underweight was there some other reason you were told to give MCT oil? Mostly it is used for kids who can't gain weight. At 30 months De-Arbra weighed 14 pounds. I was accused of everything from starving her to neglecting her, etc. I wouldn't wish what we went through on anyone. Congrats on the good cardio workup. Mine has poor lung volumes as well, mostly from the scoli repaired at age 10: double curve 98 and 72 degrees and 23% lung capacity corrected with three rods to about 25 and 15 degrees and now max 50% lung capacity with BiPap at night. How are you managing lung problems? kj mom to De-arbra age 16 PS How are people coping with their children realizing they are "different" and wanting to be "like everyone else"? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 18, 2004 Report Share Posted March 18, 2004 takes 3000mg daily. WOW!!! I never heard of anyone taking more than 1500. Are your 12 bottles vacuum or factory sealed when you get them? Looks like 1 bottle would last a little over 2 days. The unopened ones I'd think are OK, I'd refrigerate the one you open though. My pharmacist would put the syrup in a 16 ounce bottle 2 per month and it was marked on the side "refrigerate". Does your get side effects like upset stomach cramping or diarrhea from this? Mine had cramps if I didn't divide the doses throughout the day. We had the awful smelling sweat and stool for a long time until I began refrigerating it. Then too she grew physically and her 1300mg became proportionally different even though no dose change, and she breaks the scale at a whopping 102 pounds now at 5'2". If she isn't underweight was there some other reason you were told to give MCT oil? Mostly it is used for kids who can't gain weight. At 30 months De-Arbra weighed 14 pounds. I was accused of everything from starving her to neglecting her, etc. I wouldn't wish what we went through on anyone. Congrats on the good cardio workup. Mine has poor lung volumes as well, mostly from the scoli repaired at age 10: double curve 98 and 72 degrees and 23% lung capacity corrected with three rods to about 25 and 15 degrees and now max 50% lung capacity with BiPap at night. How are you managing lung problems? kj mom to De-arbra age 16 PS How are people coping with their children realizing they are "different" and wanting to be "like everyone else"? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 18, 2004 Report Share Posted March 18, 2004 has been on Carnitor since 1995 and we were never told it needed to be kept in the fridge. I'll be asking about this! I would hate to think that all this time no one has ever told us this. We get 12 bottles of 4 ozs each,this is a 1 month supply for her. takes 3000mg daily. How much MCT oil is recommended ? Do they go by weight? has been on 1 teaspoon 3x daily for the last year or so,her weight is over 200 lbs.I called today and ask if we could increase it to 2 teaspoons.I was told I could do this ,but I would like to know what others are taking. ,Mom to PS saw the cardio yesterday and got a very good report as far as her heart is concerned.He felt the problems she has are more related to low lung volume.I thought this was the case but I wanted to be sure nothing else was going on. Carnitor By the way, some pharmacists may not tell you: refrigerate Carnitor!It breaks down at room temp. The tablets are far worse (they turn to foul smelling mush out of the air-tight foil or at room temp) but the liquid is best kept in the door of the fridge as well. KJDe-Arbra 's mom Please contact mito-owner with any problems or questions. Please contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 18, 2004 Report Share Posted March 18, 2004 has been on Carnitor since 1995 and we were never told it needed to be kept in the fridge. I'll be asking about this! I would hate to think that all this time no one has ever told us this. We get 12 bottles of 4 ozs each,this is a 1 month supply for her. takes 3000mg daily. How much MCT oil is recommended ? Do they go by weight? has been on 1 teaspoon 3x daily for the last year or so,her weight is over 200 lbs.I called today and ask if we could increase it to 2 teaspoons.I was told I could do this ,but I would like to know what others are taking. ,Mom to PS saw the cardio yesterday and got a very good report as far as her heart is concerned.He felt the problems she has are more related to low lung volume.I thought this was the case but I wanted to be sure nothing else was going on. Carnitor By the way, some pharmacists may not tell you: refrigerate Carnitor!It breaks down at room temp. The tablets are far worse (they turn to foul smelling mush out of the air-tight foil or at room temp) but the liquid is best kept in the door of the fridge as well. KJDe-Arbra 's mom Please contact mito-owner with any problems or questions. Please contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 18, 2004 Report Share Posted March 18, 2004 has been on Carnitor since 1995 and we were never told it needed to be kept in the fridge. I'll be asking about this! I would hate to think that all this time no one has ever told us this. We get 12 bottles of 4 ozs each,this is a 1 month supply for her. takes 3000mg daily. How much MCT oil is recommended ? Do they go by weight? has been on 1 teaspoon 3x daily for the last year or so,her weight is over 200 lbs.I called today and ask if we could increase it to 2 teaspoons.I was told I could do this ,but I would like to know what others are taking. ,Mom to PS saw the cardio yesterday and got a very good report as far as her heart is concerned.He felt the problems she has are more related to low lung volume.I thought this was the case but I wanted to be sure nothing else was going on. Carnitor By the way, some pharmacists may not tell you: refrigerate Carnitor!It breaks down at room temp. The tablets are far worse (they turn to foul smelling mush out of the air-tight foil or at room temp) but the liquid is best kept in the door of the fridge as well. KJDe-Arbra 's mom Please contact mito-owner with any problems or questions. Please contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 19, 2004 Report Share Posted March 19, 2004 Sheldon is 23 lb and 29 months old and was put on 2000 mg of carnitine a day when we were last in the hospital. We don't know if it's that or the B1 he also started on but he seems to be processing things a lot faster since then and is trying to communicate more. > In a message dated 3/18/04 11:54:31 PM Pacific Standard Time, > ldemoss@k... writes: > > takes 3000mg daily. > WOW!!! I never heard of anyone taking more than 1500. Are your 12 bottles > vacuum or factory sealed when you get them? Looks like 1 bottle would last a > little over 2 days. The unopened ones I'd think are OK, I'd refrigerate the one > you open though. My pharmacist would put the syrup in a 16 ounce bottle 2 per > month and it was marked on the side " refrigerate " . > Does your get side effects like upset stomach cramping or diarrhea > from this? Mine had cramps if I didn't divide the doses throughout the day. We > had the awful smelling sweat and stool for a long time until I began > refrigerating it. Then too she grew physically and her 1300mg became proportionally > different even though no dose change, and she breaks the scale at a whopping 102 > pounds now at 5'2 " . > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 19, 2004 Report Share Posted March 19, 2004 Sheldon is 23 lb and 29 months old and was put on 2000 mg of carnitine a day when we were last in the hospital. We don't know if it's that or the B1 he also started on but he seems to be processing things a lot faster since then and is trying to communicate more. > In a message dated 3/18/04 11:54:31 PM Pacific Standard Time, > ldemoss@k... writes: > > takes 3000mg daily. > WOW!!! I never heard of anyone taking more than 1500. Are your 12 bottles > vacuum or factory sealed when you get them? Looks like 1 bottle would last a > little over 2 days. The unopened ones I'd think are OK, I'd refrigerate the one > you open though. My pharmacist would put the syrup in a 16 ounce bottle 2 per > month and it was marked on the side " refrigerate " . > Does your get side effects like upset stomach cramping or diarrhea > from this? Mine had cramps if I didn't divide the doses throughout the day. We > had the awful smelling sweat and stool for a long time until I began > refrigerating it. Then too she grew physically and her 1300mg became proportionally > different even though no dose change, and she breaks the scale at a whopping 102 > pounds now at 5'2 " . > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 19, 2004 Report Share Posted March 19, 2004 Interesting. We leave Leah's carnitor out and never has any one told us to refrigerator it. Will check on that one. Plus, we've been warming it in the microwave for 5 seconds to "melt" the co-Q10 better to mix it with every thing. And I've never, ever noticed a weird smell from that or from Leah. But this is interesting and will keep an eye on that. Also, am picking up a new bottle of Carnitor and will ask if it needs to be refrigerated. Nerenhausen mom to Leah sol8air@... wrote: Depends how long it's been open if it's the liquid. Health food stores always refrigerate it. Pharmacies are schizophrenic (some do some don't even know what it is). The tablets go from nice hard compact pills to enormous soft moist mushy foul smelling things in a matter of hours, can't even pick them up they disintegrate -- and I live in Seattle where it is cool and damp year round. When we were in Florida she had the liquid and the pharmacy kept it refrigerated. Didn't smell right if it sat out. Supposed to be cherry. The kid noticed it too, like if I'd prepare it in her noon milk and send her to school with it and it sat out the milk wouldn't sour but the carnitor went yucky. Never ever warm it in the microwave either, like if you are mixing it in formula (I always did cos the kid hated the taste). Warm the milk or whatever first and add the carnitor at the last moment. I don't know if the broken down stuff is less ! effective it just smells rotten. Like aspirin that is old smells bad but probably still works I guess maybe not as well. Bad carnitor makes your child smell bad too (stool and sweat had a noxious odor) but rather than being dose related as they tell us you'll likely notice refrigerating it makes that go away. kj Please contact mito-owner with any problems or questions. This message scanned for viruses by Corecomm Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 19, 2004 Report Share Posted March 19, 2004 Interesting. We leave Leah's carnitor out and never has any one told us to refrigerator it. Will check on that one. Plus, we've been warming it in the microwave for 5 seconds to "melt" the co-Q10 better to mix it with every thing. And I've never, ever noticed a weird smell from that or from Leah. But this is interesting and will keep an eye on that. Also, am picking up a new bottle of Carnitor and will ask if it needs to be refrigerated. Nerenhausen mom to Leah sol8air@... wrote: Depends how long it's been open if it's the liquid. Health food stores always refrigerate it. Pharmacies are schizophrenic (some do some don't even know what it is). The tablets go from nice hard compact pills to enormous soft moist mushy foul smelling things in a matter of hours, can't even pick them up they disintegrate -- and I live in Seattle where it is cool and damp year round. When we were in Florida she had the liquid and the pharmacy kept it refrigerated. Didn't smell right if it sat out. Supposed to be cherry. The kid noticed it too, like if I'd prepare it in her noon milk and send her to school with it and it sat out the milk wouldn't sour but the carnitor went yucky. Never ever warm it in the microwave either, like if you are mixing it in formula (I always did cos the kid hated the taste). Warm the milk or whatever first and add the carnitor at the last moment. I don't know if the broken down stuff is less ! effective it just smells rotten. Like aspirin that is old smells bad but probably still works I guess maybe not as well. Bad carnitor makes your child smell bad too (stool and sweat had a noxious odor) but rather than being dose related as they tell us you'll likely notice refrigerating it makes that go away. kj Please contact mito-owner with any problems or questions. This message scanned for viruses by Corecomm Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 19, 2004 Report Share Posted March 19, 2004 According to Sigma-Tau, Carnitor liquid and tablets should be stored at controlled room temp (25 degrees C). There is no need to refrigerate it. I currently take 3000mg/day, but have taken as much as 6000mg/day. It does cause GI problems (ulcers, bleeding), but for me, it's a small price to pay. Theresa > By the way, some pharmacists may not tell you: refrigerate Carnitor! > It breaks down at room temp. The tablets are far worse (they turn to foul > smelling mush out of the air-tight foil or at room temp) but the liquid is best > kept in the door of the fridge as well. > > KJ > De-Arbra 's mom Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 19, 2004 Report Share Posted March 19, 2004 According to Sigma-Tau, Carnitor liquid and tablets should be stored at controlled room temp (25 degrees C). There is no need to refrigerate it. I currently take 3000mg/day, but have taken as much as 6000mg/day. It does cause GI problems (ulcers, bleeding), but for me, it's a small price to pay. Theresa > By the way, some pharmacists may not tell you: refrigerate Carnitor! > It breaks down at room temp. The tablets are far worse (they turn to foul > smelling mush out of the air-tight foil or at room temp) but the liquid is best > kept in the door of the fridge as well. > > KJ > De-Arbra 's mom Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 19, 2004 Report Share Posted March 19, 2004 According to Sigma-Tau, Carnitor liquid and tablets should be stored at controlled room temp (25 degrees C). There is no need to refrigerate it. I currently take 3000mg/day, but have taken as much as 6000mg/day. It does cause GI problems (ulcers, bleeding), but for me, it's a small price to pay. Theresa > By the way, some pharmacists may not tell you: refrigerate Carnitor! > It breaks down at room temp. The tablets are far worse (they turn to foul > smelling mush out of the air-tight foil or at room temp) but the liquid is best > kept in the door of the fridge as well. > > KJ > De-Arbra 's mom Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 20, 2004 Report Share Posted March 20, 2004 kj, The bottles are factory sealed. has very loose bm's several times a day.However this does not seem to bother her.She does not appear to have any pain or stomach upset. The way I read the ads for Carnitor 3000mg is the maximum dose. also takes Depakote,which depleats carnitine in the body,so I guess what we're doing is trying to counter balance the 2 drugs. I've discussed the affect of Depakote on the mito with the doc's.BUT due to all the problems she's had when we try changing to something else and the fact that we check her liver often and she's been on Depakote for over 10 years we just decided to let " well enough alone" is 21yrs old, 5' 2" tall and weights 203.She has gained SEVERAL lbs since she got the g-tube.Plus the fact she does not do any kind of exercise,she can't even turn her self over in bed anymore. The MCT oil helps the body break down and use food for energy.I'm not sure I put that exactly right,but mct is easier for the body to use. has a purcussion vest,when she's willing,we use it to try to strengthen her lungs.She doesn't have congestion ,but has a VERY shallow breath and doesn't expand the lungs.We have an oximeter and if her sats get below 91 we start the O2. As for the "different" ?,I really don't know.We are a large family and do most everything together. We try to involve ,but a lot of the time now she is not interested,lack of energy.When she was able we tried keeping her involved with other things.She was in the PEP club at school,played softball,took dance and swiming lessons,yada yada yada.When she couldn't do those things anymore,we went to Special Olympics.There she was a member of the cheerleading team,went snow sking, bowling and again yada yada yada.Now we do our own things,we have party's for everything. Good Luck, ,Mom to ---- Original Message ----- From: sol8air@... To: Mito Sent: Friday, March 19, 2004 3:23 AM Subject: Re: Carnitor takes 3000mg daily.WOW!!! I never heard of anyone taking more than 1500. Are your 12 bottles vacuum or factory sealed when you get them? Looks like 1 bottle would last a little over 2 days. The unopened ones I'd think are OK, I'd refrigerate the one you open though. My pharmacist would put the syrup in a 16 ounce bottle 2 per month and it was marked on the side "refrigerate". Does your get side effects like upset stomach cramping or diarrhea from this? Mine had cramps if I didn't divide the doses throughout the day. We had the awful smelling sweat and stool for a long time until I began refrigerating it. Then too she grew physically and her 1300mg became proportionally different even though no dose change, and she breaks the scale at a whopping 102 pounds now at 5'2". If she isn't underweight was there some other reason you were told to give MCT oil? Mostly it is used for kids who can't gain weight. At 30 months De-Arbra weighed 14 pounds. I was accused of everything from starving her to neglecting her, etc. I wouldn't wish what we went through on anyone. Congrats on the good cardio workup. Mine has poor lung volumes as well, mostly from the scoli repaired at age 10: double curve 98 and 72 degrees and 23% lung capacity corrected with three rods to about 25 and 15 degrees and now max 50% lung capacity with BiPap at night. How are you managing lung problems?kjmom to De-arbra age 16PS How are people coping with their children realizing they are "different" and wanting to be "like everyone else"? Please contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 20, 2004 Report Share Posted March 20, 2004 kj, The bottles are factory sealed. has very loose bm's several times a day.However this does not seem to bother her.She does not appear to have any pain or stomach upset. The way I read the ads for Carnitor 3000mg is the maximum dose. also takes Depakote,which depleats carnitine in the body,so I guess what we're doing is trying to counter balance the 2 drugs. I've discussed the affect of Depakote on the mito with the doc's.BUT due to all the problems she's had when we try changing to something else and the fact that we check her liver often and she's been on Depakote for over 10 years we just decided to let " well enough alone" is 21yrs old, 5' 2" tall and weights 203.She has gained SEVERAL lbs since she got the g-tube.Plus the fact she does not do any kind of exercise,she can't even turn her self over in bed anymore. The MCT oil helps the body break down and use food for energy.I'm not sure I put that exactly right,but mct is easier for the body to use. has a purcussion vest,when she's willing,we use it to try to strengthen her lungs.She doesn't have congestion ,but has a VERY shallow breath and doesn't expand the lungs.We have an oximeter and if her sats get below 91 we start the O2. As for the "different" ?,I really don't know.We are a large family and do most everything together. We try to involve ,but a lot of the time now she is not interested,lack of energy.When she was able we tried keeping her involved with other things.She was in the PEP club at school,played softball,took dance and swiming lessons,yada yada yada.When she couldn't do those things anymore,we went to Special Olympics.There she was a member of the cheerleading team,went snow sking, bowling and again yada yada yada.Now we do our own things,we have party's for everything. Good Luck, ,Mom to ---- Original Message ----- From: sol8air@... To: Mito Sent: Friday, March 19, 2004 3:23 AM Subject: Re: Carnitor takes 3000mg daily.WOW!!! I never heard of anyone taking more than 1500. Are your 12 bottles vacuum or factory sealed when you get them? Looks like 1 bottle would last a little over 2 days. The unopened ones I'd think are OK, I'd refrigerate the one you open though. My pharmacist would put the syrup in a 16 ounce bottle 2 per month and it was marked on the side "refrigerate". Does your get side effects like upset stomach cramping or diarrhea from this? Mine had cramps if I didn't divide the doses throughout the day. We had the awful smelling sweat and stool for a long time until I began refrigerating it. Then too she grew physically and her 1300mg became proportionally different even though no dose change, and she breaks the scale at a whopping 102 pounds now at 5'2". If she isn't underweight was there some other reason you were told to give MCT oil? Mostly it is used for kids who can't gain weight. At 30 months De-Arbra weighed 14 pounds. I was accused of everything from starving her to neglecting her, etc. I wouldn't wish what we went through on anyone. Congrats on the good cardio workup. Mine has poor lung volumes as well, mostly from the scoli repaired at age 10: double curve 98 and 72 degrees and 23% lung capacity corrected with three rods to about 25 and 15 degrees and now max 50% lung capacity with BiPap at night. How are you managing lung problems?kjmom to De-arbra age 16PS How are people coping with their children realizing they are "different" and wanting to be "like everyone else"? Please contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
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