Guest guest Posted March 18, 2004 Report Share Posted March 18, 2004 Hello - I'm new tothi group and have a question. My daughter was Dx about 2 years ago and has just been prescribed the Mito cocktail. I've had difficulty finding a pharmacy that would make it. In the meantime I did get all the vitamins and currently she is taking all the individually tablets. Her cocktail consists of a total of the following, divided over three times a day. - Vitamin C - 1000mg - Q10 - 400 mg - Vitamin E - 600 mg - Lipoic acid - 600 mg - B2 - 200 mg and Carnitor 1500 mg I would appreciate hearing from anyone who has had experience with the Mito cocktail - is the liquid better that all the individually tablets - what response have you seen as a result of taking the cocktail. Thanks. Kathleen J. Kennerley kkennerl@... -=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=- The information contained within this e-mail message, including the attachments, is legally privileged and confidential information, may constitute inside information and is intended only for the use of the addressee. If the reader of this message is not the intended recipient, or the employee or agent responsible to deliver it to the intended recipient, you are hereby notified that any dissemination, distribution or copying of this communication is strictly prohibited and may be unlawful. If you have received this communication in error, please immediately notify me by replying to this message and destroy the original message. -=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 19, 2004 Report Share Posted March 19, 2004 Pretty much all of the medications are over the counter. The only one I know that needs a prescription is the Carnitor. I have never had a problem getting it, but it usually needs to be special ordered. Even with special ordering I get it in a day. As for the rest of them try to get the best available. You need to see how well they are absorbed. A great place for the Co Q10 is www.epic4health.com they sell liquid and a softgel. Dr. Cohen told us that it is the best on the market, but it is rather expensive. I believe alot of people in this group use GNC products and comment on the quality. As far as results of the cocktail go, its all on the individual. Some people do not do well on them and have more side effects than it is worth. Some people, like my daughter, do excellent on them. Before meds we were almost certain she would end up with a liver transplant, at best. Now since being on meds, it is very hard to tell she even has an illness. She plays just like any other toddler. We use liquid forms of everything, but my daughter has a G tube so it is easiest for us. Before her tube we usually mixed the liquids in her drinks, most of the medications can be mixed. We also put somethings into her food. This worked well for awhile, until there was too much and it affected the taste of the food/drink. My best advise it to experiment. Good luck. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 19, 2004 Report Share Posted March 19, 2004 I never heard of it being prescribed as a single "cocktail" that a pharmacist would compound, only that the things commonly prescribed to MITO kids is collectively referred to as a cocktail. The exact components vary from kid to kid as our symptoms vary so widely also. Mine is on: 2 carnitine (rx carnitor) tablets (333 mg each) twice a day 3 Mega Creatine (1200 mg each) twice a day 1 Coenzyme Q10 600 mg daily am 1 ACEs (vit A, C & E: ocuvite or equiv) daily am 1 vit E 200 IU daily pm 1 B100 (100 mg each kind of B vit) daily am 1 B2 (riboflavin) 250mg daily am 1 Biotin 7500 mcg daily am 1 Selenium 100 mcg daily pm I find I can get the creatine (capsules are better than powder which becomes inert a couple days after you open the can) online cheapest and also the coQ10. The rest I get at the local health food store (except the carnitor which thankfully is a prescription nowadays, wasn't always). When Ash was little I opened capsules or crushed everything and put it in apple butter. Now she is older she takes the pills. kj mom to De-Arbra age 16 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 19, 2004 Report Share Posted March 19, 2004 I never heard of it being prescribed as a single "cocktail" that a pharmacist would compound, only that the things commonly prescribed to MITO kids is collectively referred to as a cocktail. The exact components vary from kid to kid as our symptoms vary so widely also. Mine is on: 2 carnitine (rx carnitor) tablets (333 mg each) twice a day 3 Mega Creatine (1200 mg each) twice a day 1 Coenzyme Q10 600 mg daily am 1 ACEs (vit A, C & E: ocuvite or equiv) daily am 1 vit E 200 IU daily pm 1 B100 (100 mg each kind of B vit) daily am 1 B2 (riboflavin) 250mg daily am 1 Biotin 7500 mcg daily am 1 Selenium 100 mcg daily pm I find I can get the creatine (capsules are better than powder which becomes inert a couple days after you open the can) online cheapest and also the coQ10. The rest I get at the local health food store (except the carnitor which thankfully is a prescription nowadays, wasn't always). When Ash was little I opened capsules or crushed everything and put it in apple butter. Now she is older she takes the pills. kj mom to De-Arbra age 16 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 19, 2004 Report Share Posted March 19, 2004 I never heard of it being prescribed as a single "cocktail" that a pharmacist would compound, only that the things commonly prescribed to MITO kids is collectively referred to as a cocktail. The exact components vary from kid to kid as our symptoms vary so widely also. Mine is on: 2 carnitine (rx carnitor) tablets (333 mg each) twice a day 3 Mega Creatine (1200 mg each) twice a day 1 Coenzyme Q10 600 mg daily am 1 ACEs (vit A, C & E: ocuvite or equiv) daily am 1 vit E 200 IU daily pm 1 B100 (100 mg each kind of B vit) daily am 1 B2 (riboflavin) 250mg daily am 1 Biotin 7500 mcg daily am 1 Selenium 100 mcg daily pm I find I can get the creatine (capsules are better than powder which becomes inert a couple days after you open the can) online cheapest and also the coQ10. The rest I get at the local health food store (except the carnitor which thankfully is a prescription nowadays, wasn't always). When Ash was little I opened capsules or crushed everything and put it in apple butter. Now she is older she takes the pills. kj mom to De-Arbra age 16 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 19, 2004 Report Share Posted March 19, 2004 - what response have you seen as a result of taking the cocktail. Oh I forgot: WONDERFUL RESPONSE!! Ash was always sick with major respiratory problems, could not walk or even stand until we started these meds. Now she walks with a walker and has not even had a cold for more than 5 years. If she misses a day or two of meds for any reason (too long to recite) the effects are almost immediate in the loss of muscle tone and weakness so that again she isn't able to walk or hold her head up. Big difference these meds make. kj mom of De-Arbra Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 19, 2004 Report Share Posted March 19, 2004 hi kathleen, my daughter was one a mito cocktail for about a year and we did not see any positive or negative results. (so, she is no longer on it) however, just wanted to let you know: all 5 vits were compounded into one liquid and it was flavored. i believe that is much easier than giving all individually. we got it through a local pharmacy and our insurance paid for it all. hope that helps. bethany mom to brennan 7, palmer & anna grace (leighs) 4 > Hello - I'm new tothi group and have a question. > > My daughter was Dx about 2 years ago and has just been prescribed the Mito > cocktail. > I've had difficulty finding a pharmacy that would make it. In the meantime I > did get all the vitamins and currently she is taking all the individually > tablets. > > Her cocktail consists of a total of the following, divided over three times > a day. > - Vitamin C - 1000mg > - Q10 - 400 mg > - Vitamin E - 600 mg > - Lipoic acid - 600 mg > - B2 - 200 mg > > and Carnitor 1500 mg > > > I would appreciate hearing from anyone who has had experience with the Mito > cocktail > - is the liquid better that all the individually tablets > - what response have you seen as a result of taking the cocktail. > > Thanks. > > > Kathleen J. Kennerley > kkennerl@m... > > > > > -=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=- > The information contained within this e-mail message, > including the attachments, is legally privileged and > confidential information, may constitute inside information > and is intended only for the use of the addressee. If the > reader of this message is not the intended recipient, or the > employee or agent responsible to deliver it to the intended > recipient, you are hereby notified that any dissemination, > distribution or copying of this communication is strictly > prohibited and may be unlawful. If you have received this > communication in error, please immediately notify me by > replying to this message and destroy the original message. > -=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 22, 2004 Report Share Posted March 22, 2004 we got it through a local pharmacy and our insurance paid for it all. I wish I knew this ten years ago. This new generation of MITO kids is very lucky (their moms too <grin>)! kj mom to De-Arbra age 16 Quote Link to comment Share on other sites More sharing options...
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