Guest guest Posted March 31, 2004 Report Share Posted March 31, 2004 Tamara, The following was taken from the umdf website. is on the coq10, carnitor, riboflavin,lipoic acid, Vit E, Vit C, and folic acid. I don't really know what is considered the true " Cocktail " . It has helped a lot. Dawn First Tier Supplements Supplement Dose Range CoQ10 5 – 15 mg/kg/day Levo-carnitine (Carnitor) Variable, starting dose of 30 mg/kg/day, typical maximum of 100 mg/kg/day Riboflavin (B2) 100 – 400 mg a day Second Tier Supplement Supplement Dose Range Acetyl-L-Carnitine 250 – 1000 mg per day Thiamine (B1) 50 – 100 mg a day Nicotinamide (B3) 50 – 100 mg a day Vitamin E 200 – 400 IU; 1 – 3 times a day Vitamin C 100 – 500 mg; 1 – 3 times a day Lipoic Acid (a -lipoate) 60 – 200 mg; 3 times a day Selenium 25 – 50 micrograms a day b -carotene 10,000 IU; every other day to daily Biotin 2.5 – 10 mg a day Folic Acid 1 – 10 mg a day --------------------------------------------------------------------- ----------- Medication, Minerals, Vitamins and Substrates that May be Helpful Any use of the following medications, minerals, vitamins and substrates MUST BE made only under a physician's direction Supplement Dose Range Calcium Variable Magnesium Variable Phosphorus Variable Succinate 6 gm per day Creatine 5 gm bid after initial load (adults) Uridine To be determined Citrates Variable Prednisone Variable Vitamin K3 5-30 mg per day --------------------------------------------------------------------- ----------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 31, 2004 Report Share Posted March 31, 2004 Tamara, The following was taken from the umdf website. is on the coq10, carnitor, riboflavin,lipoic acid, Vit E, Vit C, and folic acid. I don't really know what is considered the true " Cocktail " . It has helped a lot. Dawn First Tier Supplements Supplement Dose Range CoQ10 5 – 15 mg/kg/day Levo-carnitine (Carnitor) Variable, starting dose of 30 mg/kg/day, typical maximum of 100 mg/kg/day Riboflavin (B2) 100 – 400 mg a day Second Tier Supplement Supplement Dose Range Acetyl-L-Carnitine 250 – 1000 mg per day Thiamine (B1) 50 – 100 mg a day Nicotinamide (B3) 50 – 100 mg a day Vitamin E 200 – 400 IU; 1 – 3 times a day Vitamin C 100 – 500 mg; 1 – 3 times a day Lipoic Acid (a -lipoate) 60 – 200 mg; 3 times a day Selenium 25 – 50 micrograms a day b -carotene 10,000 IU; every other day to daily Biotin 2.5 – 10 mg a day Folic Acid 1 – 10 mg a day --------------------------------------------------------------------- ----------- Medication, Minerals, Vitamins and Substrates that May be Helpful Any use of the following medications, minerals, vitamins and substrates MUST BE made only under a physician's direction Supplement Dose Range Calcium Variable Magnesium Variable Phosphorus Variable Succinate 6 gm per day Creatine 5 gm bid after initial load (adults) Uridine To be determined Citrates Variable Prednisone Variable Vitamin K3 5-30 mg per day --------------------------------------------------------------------- ----------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 31, 2004 Report Share Posted March 31, 2004 Tamara, The following was taken from the umdf website. is on the coq10, carnitor, riboflavin,lipoic acid, Vit E, Vit C, and folic acid. I don't really know what is considered the true " Cocktail " . It has helped a lot. Dawn First Tier Supplements Supplement Dose Range CoQ10 5 – 15 mg/kg/day Levo-carnitine (Carnitor) Variable, starting dose of 30 mg/kg/day, typical maximum of 100 mg/kg/day Riboflavin (B2) 100 – 400 mg a day Second Tier Supplement Supplement Dose Range Acetyl-L-Carnitine 250 – 1000 mg per day Thiamine (B1) 50 – 100 mg a day Nicotinamide (B3) 50 – 100 mg a day Vitamin E 200 – 400 IU; 1 – 3 times a day Vitamin C 100 – 500 mg; 1 – 3 times a day Lipoic Acid (a -lipoate) 60 – 200 mg; 3 times a day Selenium 25 – 50 micrograms a day b -carotene 10,000 IU; every other day to daily Biotin 2.5 – 10 mg a day Folic Acid 1 – 10 mg a day --------------------------------------------------------------------- ----------- Medication, Minerals, Vitamins and Substrates that May be Helpful Any use of the following medications, minerals, vitamins and substrates MUST BE made only under a physician's direction Supplement Dose Range Calcium Variable Magnesium Variable Phosphorus Variable Succinate 6 gm per day Creatine 5 gm bid after initial load (adults) Uridine To be determined Citrates Variable Prednisone Variable Vitamin K3 5-30 mg per day --------------------------------------------------------------------- ----------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 1, 2004 Report Share Posted April 1, 2004 The mito cocktail has literally saved my daughters life. Her liver was deteriorating so fast and within a few months of the cocktail the damage has stopped. Of course now there is permanent damage, but it is not getting worse. I know that the cocktail does not work as well for some and it does not work at all on others, the only way to know is to try. The cocktail is different on almost everybody. Your mito doc. would do bloodwork and check levels of everything, they add what is low to the cocktail. The two big ones are the CoQ10 and the Carnitor. My daughter is deficient in both, but I believe they usually still usually have them in the cocktail if they are not. (I really don't know for sure, so I would check on it.) Carnitor is a prescription so insurance usually pays for it. You said your son is already on the CoQ10 so you should know that one. (Dr. Cohen strongly recommends the one from Tischon, it is supposed to be the best, $52 a bottle for liquid.) For the rest of the things it is all up to the doctor to decide. Gracie is on about 9 medicines but they are all for mito related problems. The rest of her vitamins come from Poly-Vi-Sol which is sold over the counter, just about everywhere. Grace was started partly on the cocktail (Carnitor and poly-vi-sol) even before her first mito bloodwork even came back. Dr. Cohen was pretty confident that she had some sort of metabolic disorder and he said the Carnitor will not hurt you if you do not need it. I hope this helps. Best of luck. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 1, 2004 Report Share Posted April 1, 2004 The mito cocktail has literally saved my daughters life. Her liver was deteriorating so fast and within a few months of the cocktail the damage has stopped. Of course now there is permanent damage, but it is not getting worse. I know that the cocktail does not work as well for some and it does not work at all on others, the only way to know is to try. The cocktail is different on almost everybody. Your mito doc. would do bloodwork and check levels of everything, they add what is low to the cocktail. The two big ones are the CoQ10 and the Carnitor. My daughter is deficient in both, but I believe they usually still usually have them in the cocktail if they are not. (I really don't know for sure, so I would check on it.) Carnitor is a prescription so insurance usually pays for it. You said your son is already on the CoQ10 so you should know that one. (Dr. Cohen strongly recommends the one from Tischon, it is supposed to be the best, $52 a bottle for liquid.) For the rest of the things it is all up to the doctor to decide. Gracie is on about 9 medicines but they are all for mito related problems. The rest of her vitamins come from Poly-Vi-Sol which is sold over the counter, just about everywhere. Grace was started partly on the cocktail (Carnitor and poly-vi-sol) even before her first mito bloodwork even came back. Dr. Cohen was pretty confident that she had some sort of metabolic disorder and he said the Carnitor will not hurt you if you do not need it. I hope this helps. Best of luck. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 1, 2004 Report Share Posted April 1, 2004 Abbey is three and she has been on a " cocktail " for a little over a year now. In this time she has started walking, can hold a cup and suck from a straw, is feeding herself, throw a ball, lean down to pick something up and is beginning to run (in the last few weeks)...I could go on. Maybe she would have done these things anyway but I truly believe that these vitamins are the reason she is progressing so well, albeit slow. It certainly won't hurt! We spend an average of $100 a month on the vitamin and $30 on hte carnitor. Good Luck! > Hi to everyone!!!!! > had his 5 year check up was yesterday! Shots and all, very > exciting!!!! He tells everyone " Mommy let the doctor shoot me " . > > has lost a good part of his strength and endurance, since our 4 > year check up. We had noticed him getting weaker, of course it is > harder to hear that from the doctor. We have noticed things such > as...he use to be able to hop, balance on one leg, skip,step up stair > without help and so on. He has lost that ability, just in the last > year. I know he has a slow progressing Mito, but apparently not slow > enough. I know we are lucky, because he still is able to walk part > time. And my heart goes out to all of you!!!! > My question is!!!! > Would MitoCocktail help him? What is it used for? Is it expensive? > We are on CoQ10, 50mg in the morning and 100 a night. Yet I have > seen no difference at all. > He is getting ready to start Kindergarden and we would really like > him to feel normal. > Any input would be great!!!! > Tamara(mommy of , unspecific Mito) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 1, 2004 Report Share Posted April 1, 2004 Abbey is three and she has been on a " cocktail " for a little over a year now. In this time she has started walking, can hold a cup and suck from a straw, is feeding herself, throw a ball, lean down to pick something up and is beginning to run (in the last few weeks)...I could go on. Maybe she would have done these things anyway but I truly believe that these vitamins are the reason she is progressing so well, albeit slow. It certainly won't hurt! We spend an average of $100 a month on the vitamin and $30 on hte carnitor. Good Luck! > Hi to everyone!!!!! > had his 5 year check up was yesterday! Shots and all, very > exciting!!!! He tells everyone " Mommy let the doctor shoot me " . > > has lost a good part of his strength and endurance, since our 4 > year check up. We had noticed him getting weaker, of course it is > harder to hear that from the doctor. We have noticed things such > as...he use to be able to hop, balance on one leg, skip,step up stair > without help and so on. He has lost that ability, just in the last > year. I know he has a slow progressing Mito, but apparently not slow > enough. I know we are lucky, because he still is able to walk part > time. And my heart goes out to all of you!!!! > My question is!!!! > Would MitoCocktail help him? What is it used for? Is it expensive? > We are on CoQ10, 50mg in the morning and 100 a night. Yet I have > seen no difference at all. > He is getting ready to start Kindergarden and we would really like > him to feel normal. > Any input would be great!!!! > Tamara(mommy of , unspecific Mito) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 1, 2004 Report Share Posted April 1, 2004 Abbey is three and she has been on a " cocktail " for a little over a year now. In this time she has started walking, can hold a cup and suck from a straw, is feeding herself, throw a ball, lean down to pick something up and is beginning to run (in the last few weeks)...I could go on. Maybe she would have done these things anyway but I truly believe that these vitamins are the reason she is progressing so well, albeit slow. It certainly won't hurt! We spend an average of $100 a month on the vitamin and $30 on hte carnitor. Good Luck! > Hi to everyone!!!!! > had his 5 year check up was yesterday! Shots and all, very > exciting!!!! He tells everyone " Mommy let the doctor shoot me " . > > has lost a good part of his strength and endurance, since our 4 > year check up. We had noticed him getting weaker, of course it is > harder to hear that from the doctor. We have noticed things such > as...he use to be able to hop, balance on one leg, skip,step up stair > without help and so on. He has lost that ability, just in the last > year. I know he has a slow progressing Mito, but apparently not slow > enough. I know we are lucky, because he still is able to walk part > time. And my heart goes out to all of you!!!! > My question is!!!! > Would MitoCocktail help him? What is it used for? Is it expensive? > We are on CoQ10, 50mg in the morning and 100 a night. Yet I have > seen no difference at all. > He is getting ready to start Kindergarden and we would really like > him to feel normal. > Any input would be great!!!! > Tamara(mommy of , unspecific Mito) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 1, 2004 Report Share Posted April 1, 2004 Hi My son has been on Carnitor, riboflavin and coenzyme Q10 for 5 months I am curious with other mito children how long it took for results. My son is starting to improve dramatically now. I thought it would never happen. But it took 5 months of supplement to start working. (Never missed as dose!) He has a partial complex 1 dx. thru a skin biopsy. I am so happy it seems to be helping now. If anyone has a story please share thank you!! Angel Re: Mito Cocktail????? The mito cocktail has literally saved my daughters life. Her liver was deteriorating so fast and within a few months of the cocktail the damage has stopped. Of course now there is permanent damage, but it is not getting worse. I know that the cocktail does not work as well for some and it does not work at all on others, the only way to know is to try. The cocktail is different on almost everybody. Your mito doc. would do bloodwork and check levels of everything, they add what is low to the cocktail. The two big ones are the CoQ10 and the Carnitor. My daughter is deficient in both, but I believe they usually still usually have them in the cocktail if they are not. (I really don't know for sure, so I would check on it.) Carnitor is a prescription so insurance usually pays for it. You said your son is already on the CoQ10 so you should know that one. (Dr. Cohen strongly recommends the one from Tischon, it is supposed to be the best, $52 a bottle for liquid.) For the rest of the things it is all up to the doctor to decide. Gracie is on about 9 medicines but they are all for mito related problems. The rest of her vitamins come from Poly-Vi-Sol which is sold over the counter, just about everywhere. Grace was started partly on the cocktail (Carnitor and poly-vi-sol) even before her first mito bloodwork even came back. Dr. Cohen was pretty confident that she had some sort of metabolic disorder and he said the Carnitor will not hurt you if you do not need it. I hope this helps. Best of luck. Please contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 1, 2004 Report Share Posted April 1, 2004 Hi My son has been on Carnitor, riboflavin and coenzyme Q10 for 5 months I am curious with other mito children how long it took for results. My son is starting to improve dramatically now. I thought it would never happen. But it took 5 months of supplement to start working. (Never missed as dose!) He has a partial complex 1 dx. thru a skin biopsy. I am so happy it seems to be helping now. If anyone has a story please share thank you!! Angel Re: Mito Cocktail????? The mito cocktail has literally saved my daughters life. Her liver was deteriorating so fast and within a few months of the cocktail the damage has stopped. Of course now there is permanent damage, but it is not getting worse. I know that the cocktail does not work as well for some and it does not work at all on others, the only way to know is to try. The cocktail is different on almost everybody. Your mito doc. would do bloodwork and check levels of everything, they add what is low to the cocktail. The two big ones are the CoQ10 and the Carnitor. My daughter is deficient in both, but I believe they usually still usually have them in the cocktail if they are not. (I really don't know for sure, so I would check on it.) Carnitor is a prescription so insurance usually pays for it. You said your son is already on the CoQ10 so you should know that one. (Dr. Cohen strongly recommends the one from Tischon, it is supposed to be the best, $52 a bottle for liquid.) For the rest of the things it is all up to the doctor to decide. Gracie is on about 9 medicines but they are all for mito related problems. The rest of her vitamins come from Poly-Vi-Sol which is sold over the counter, just about everywhere. Grace was started partly on the cocktail (Carnitor and poly-vi-sol) even before her first mito bloodwork even came back. Dr. Cohen was pretty confident that she had some sort of metabolic disorder and he said the Carnitor will not hurt you if you do not need it. I hope this helps. Best of luck. Please contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 1, 2004 Report Share Posted April 1, 2004 Hi My son has been on Carnitor, riboflavin and coenzyme Q10 for 5 months I am curious with other mito children how long it took for results. My son is starting to improve dramatically now. I thought it would never happen. But it took 5 months of supplement to start working. (Never missed as dose!) He has a partial complex 1 dx. thru a skin biopsy. I am so happy it seems to be helping now. If anyone has a story please share thank you!! Angel Re: Mito Cocktail????? The mito cocktail has literally saved my daughters life. Her liver was deteriorating so fast and within a few months of the cocktail the damage has stopped. Of course now there is permanent damage, but it is not getting worse. I know that the cocktail does not work as well for some and it does not work at all on others, the only way to know is to try. The cocktail is different on almost everybody. Your mito doc. would do bloodwork and check levels of everything, they add what is low to the cocktail. The two big ones are the CoQ10 and the Carnitor. My daughter is deficient in both, but I believe they usually still usually have them in the cocktail if they are not. (I really don't know for sure, so I would check on it.) Carnitor is a prescription so insurance usually pays for it. You said your son is already on the CoQ10 so you should know that one. (Dr. Cohen strongly recommends the one from Tischon, it is supposed to be the best, $52 a bottle for liquid.) For the rest of the things it is all up to the doctor to decide. Gracie is on about 9 medicines but they are all for mito related problems. The rest of her vitamins come from Poly-Vi-Sol which is sold over the counter, just about everywhere. Grace was started partly on the cocktail (Carnitor and poly-vi-sol) even before her first mito bloodwork even came back. Dr. Cohen was pretty confident that she had some sort of metabolic disorder and he said the Carnitor will not hurt you if you do not need it. I hope this helps. Best of luck. Please contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 2, 2004 Report Share Posted April 2, 2004 Hi Tamara :-) {{{{{{{hugs}}}}}}}} It IS so hard to hear the doctors say something even if you've seen it and know its happening. We saw our local neuro this past week, a year since we saw him last, and it was difficult to acknowledge all thats happened in one years time. Difficult to see his (the neuro's) sadness and concern over all thats happening. We've been very blessed over here to see a real difference on the cocktail, specifically the CoQ10 and Carnitor. While our initial good results have lessened with time, I do believe we'd see a real decline if we were to stop it (and have the rare occasions when we run out to see the difference). My first thought for you is that maybe his CoQ10 dose might be too low....how much does he weigh?? Also thinking that the addition of atleast the Carnitor might be an important part for him. Has anyone ever checked his carnitine or CoQ10 levels??? Ultimatly, in some kids, the effects are difficult to see, though the concensus amongst the mito docs seems to be that specifically with these two parts of the cocktail, that even if effects are not seen its probably helping to slow the progression of things. While its little comfort if there is still progression happening, it is something to consider and appreciate. Sending good thoughts and prayers your way!!! Oh, on cost.....Carnitor is prescription, so should be nothing more than a co-pay for you. -- BIG hugs, Kass, proud mom to Chance(10-Mito), Madison(7-Mito), and Abby(6-Mito) Updates (http://www.caringbridge.org/tx/mitowhat/) "Life is not measured by the breaths we take, but by the moments that take our breath away" Unknown Would MitoCocktail help him? What is it used for? Is it expensive? We are on CoQ10, 50mg in the morning and 100 a night. Yet I have seen no difference at all. He is getting ready to start Kindergarden and we would really like him to feel normal. Any input would be great!!!! Tamara(mommy of , unspecific Mito) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 8, 2004 Report Share Posted April 8, 2004 Are ther certain test that need to be ran in order to determine whether the Mitococktail is right for us? I have called our doctor and mentioned putting on it. The office has not called back yet! Imagine that!!!! I was not sure if there had to be certain blood work done? Thank you!!!! Tamara Quote Link to comment Share on other sites More sharing options...
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