Guest guest Posted January 24, 2005 Report Share Posted January 24, 2005 when first signs of mito, my daughter was immediately put on a mito cocktail (prescribed by her neuro, advised by dr. kelley) the muscle biopsy came a year later and by then we saw no difference with the cocktail, so she has not been on since. now, she gets peptamen jr. via gtube, for the mct oil. but no restrictions on foods. (i'm sure there are probably others who do have food restrictions??) hope that helps. bethany > > Has anybody started their child on a mito cocktail without a muscle > biopsy. > > I know that I cannot control my daughter's lactate level, but does > anybody know what foods she should avoid? what she should have more > of. I have to see many doctors for more answers/results but thought > I come to the experts first. > > Thanks, > > Kerry Mother to Abigail 4 years optic atrophy, mito and Bridget 2 > years Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 24, 2005 Report Share Posted January 24, 2005 Grace started on Carnitor before she had her muscle biopsy. Dr. Cohen started her on the Carnitor at her first appointment with him. However, she was very ill at the time and he was convinced that the bloodwork she was having that day would show Carnitine Deficiency (which it did.) We did wait until after the muscle biopsy to start on the CoQ10 (reason unknown). FWIW she is also Co Q10 deficient. Find files on your PC instantly with the new MSN Toolbar Suite beta – FREE! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 24, 2005 Report Share Posted January 24, 2005 I am not sure about the current protocol, but back in 1998 when my son had his biopsy at CCF, Dr. Cohen started him on the cocktail before our first appt. His biopsy was scheduled by Dr Cohen the same trip as this first appt. I know that CCF doesn't make first evals and biopsies at the same time anymore, I am guessing because the Mito population has increased so much since 1998 that they need to see the patient more than once to determine what testing is needed. I would check with your referring doc who is handling the biopsy arrangement. I am not sure if this rule is the norm or the exception on a case by case basis. Just my 2 cents, hope it helps. > > Has anybody started their child on a mito cocktail without a muscle > biopsy. > > I know that I cannot control my daughter's lactate level, but does > anybody know what foods she should avoid? what she should have more > of. I have to see many doctors for more answers/results but thought > I come to the experts first. > > Thanks, > > Kerry Mother to Abigail 4 years optic atrophy, mito and Bridget 2 > years Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 24, 2005 Report Share Posted January 24, 2005 We began both Asenath and Zipporrah on the cocktail before their biopsies were performed. Dr. Whiteman felt their symptoms were good enough reason to treat and Asenath had abnormal carnitine and COQ10 levels as well, thus he knew she needed them. Zipporrah was began at 3 months following her first stroke as a precaution and hoping it would help prevent her further deterioration in the disease. See www.caringbridge.org/ia/mitomomof9 and www.heartbeatsformito.org to see a photo look into what Mito looks like Darla: mommy to Asenath (4) Mito, CNS Vasculitis, strokes, migraines, seizures, G-tube, hypotonicity, disautonomy, SID, global delays, asthma, cyclic vomiting, bladder issues, wheelchair for distances, eye issues, autistic behaviors, gastric emptying issues... Zipporrah (14 months) Mito, strokes, neuro-motor planning dys., SID, GERD, dysphasia, 100% G-tube fed, speech delays, extreme fatigue, excessive phlegm, asthma, trach issues, aberrant subclavian artery, disautonomy, hypertonicity, migraines, possible seizures, dumping syndrome, iron deficiency, ... Luke (16), Leah (14), Rachael (13), Isaac (10), Tirzah (8), Kezia (4), & Marquis (3), Joey & (12 months) (some with Mito symptoms) mito cocktail > > > Has anybody started their child on a mito cocktail without a muscle > biopsy. > > I know that I cannot control my daughter's lactate level, but does > anybody know what foods she should avoid? what she should have more > of. I have to see many doctors for more answers/results but thought > I come to the experts first. > > Thanks, > > Kerry Mother to Abigail 4 years optic atrophy, mito and Bridget 2 > years > > > > > > > Please contact mito-owner with any problems or questions. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 31, 2005 Report Share Posted January 31, 2005 Kery, We started on some of the cocktail before they ever ran any tests on her, this all due to having the same symptoms and such... They started her out on the Carnitor, q-10 geltabs, and the calcium. Of course we added some more as they years went. The doc's never did really put her on a strict diet. I asked about the Ketone Diet a few times and they always said no, she needs all the fat she can get. I don't know if this helps or not. Good luck, Angiekdoc38 wrote: Has anybody started their child on a mito cocktail without a muscle biopsy.I know that I cannot control my daughter's lactate level, but does anybody know what foods she should avoid? what she should have more of. I have to see many doctors for more answers/results but thought I come to the experts first.Thanks,Kerry Mother to Abigail 4 years optic atrophy, mito and Bridget 2 yearsPlease contact mito-owner with any problems or questions. __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 31, 2005 Report Share Posted January 31, 2005 Kery, We started on some of the cocktail before they ever ran any tests on her, this all due to having the same symptoms and such... They started her out on the Carnitor, q-10 geltabs, and the calcium. Of course we added some more as they years went. The doc's never did really put her on a strict diet. I asked about the Ketone Diet a few times and they always said no, she needs all the fat she can get. I don't know if this helps or not. Good luck, Angiekdoc38 wrote: Has anybody started their child on a mito cocktail without a muscle biopsy.I know that I cannot control my daughter's lactate level, but does anybody know what foods she should avoid? what she should have more of. I have to see many doctors for more answers/results but thought I come to the experts first.Thanks,Kerry Mother to Abigail 4 years optic atrophy, mito and Bridget 2 yearsPlease contact mito-owner with any problems or questions. __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 18, 2005 Report Share Posted April 18, 2005 Welcome to the group. Yes, Carnitor is common to cause an upset stomach. You may want to try to give it more slowly or even just add it to her tube feedings. (It can be mixed into milk, or any liquid.) We give the Carnitor to Grace in her sippy cup of milk. If you send me your email, I can write Gracies story for you. I am unable to write too much now as I have my 7 month old on my lap. He has a thing for "helping" me type so it would be tough right now. Best wishes Find just what you're after with the new, more precise MSN Search - try it now! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 10, 2005 Report Share Posted September 10, 2005 hi all. i was wondering if any of you are on the cocktail. i just started the creatine a couple of days ago and i ache all over do you know if thats normal for the creatine or not thank you judy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 10, 2005 Report Share Posted September 10, 2005 Judy You might want to go off the creatine, until your body gets use to the other supplements. It would also show you if the ache is due to the creatine or not. I would then try starting the creatine at a very low level such as a 1/4 of a teaspoons and then increase every week. You might also check to see if you are doing more as a result of the creatine. The creatine doesn't seem to improve my muscle strength, but I recover faster from doing things and am more motivated to get up and do more. I therefore can over-do it. laurie > hi all. i was wondering if any of you are on the cocktail. i just > started the creatine a couple of days ago and i ache all over do you > know if thats normal for the creatine or not > thank you > judy > > > > > > Medical advice, information, opinions, data and statements contained herein are not necessarily those of the list moderators. The author of this e mail is entirely responsible for its content. List members are reminded of their responsibility to evaluate the content of the postings and consult with their physicians regarding changes in their own treatment. > > Personal attacks are not permitted on the list and anyone who sends one is automatically moderated or removed depending on the severity of the attack. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 11, 2005 Report Share Posted September 11, 2005 Joanne, I'm a little confused. Creatine is only available OTC. There is no rx form. Did you perhaps mean carnitine? That is available both OTC and rx. Barbara > RE: mito cocktail > > Judy, > > > > I am not on the creatine any more. I tried to take it a couple of times and > each time I had the same reaction that you have. I was only taking OTC > creatine and not prescription, so that might make a difference, but I had a > hard time tolerating it. The funny thing was I did feel like my muscles > were a little stronger while I was on it. > > > > Joanne > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 11, 2005 Report Share Posted September 11, 2005 Oops sorry. You are right I mean carnitine. Mito brain in action! : o) I have never tried creatine. Joanne _____ From: [mailto: ] On Behalf Of Barbara Seaman Sent: Sunday, September 11, 2005 6:40 AM To: Subject: RE: mito cocktail Joanne, I'm a little confused. Creatine is only available OTC. There is no rx form. Did you perhaps mean carnitine? That is available both OTC and rx. Barbara > RE: mito cocktail > > Judy, > > > > I am not on the creatine any more. I tried to take it a couple of times and > each time I had the same reaction that you have. I was only taking OTC > creatine and not prescription, so that might make a difference, but I had a > hard time tolerating it. The funny thing was I did feel like my muscles > were a little stronger while I was on it. > > > > Joanne > Medical advice, information, opinions, data and statements contained herein are not necessarily those of the list moderators. The author of this e mail is entirely responsible for its content. List members are reminded of their responsibility to evaluate the content of the postings and consult with their physicians regarding changes in their own treatment. Personal attacks are not permitted on the list and anyone who sends one is automatically moderated or removed depending on the severity of the attack. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 20, 2006 Report Share Posted February 20, 2006 I think recall seeing that someone had been able to get their insurance to cover the components to the mito cocktail. My insurance will not even if the mito cocktail is compounded to include the various components of the cocktail. I have even submitted a formulation that included carnitor which is a prescription only component. I had been on a compounded mito cocktail until early January when my insurance company decided they would no longer cover it. I did okay for the month of January but since then I have had a chronic dull headache, my fine motor movements have decreased. I can hardly read my hand writing. My ability to problem solve has decreased and my frustration levels increased. The pain in my muscles and joints has increased and my exercise tolerance decreased. I am on disability so having the mito cocktail covered by my insurance is essential otherwise I cannot afford it. I cannot find the 3 published articles that my insurance company requires to prove it is helpful. What can I do or where can I turn for information? I need help. Thank you. a Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 20, 2006 Report Share Posted February 20, 2006 a, Not sure which parts of the mito cocktail you were taking, but if you don't have a copy of Cohen and Gold's " Treatment of Mitochondrial Cytopathy, " it would go a long way toward validating efficacy for insurance purposes. Includes detailed sections on each cofactor with case histories and/or small studies where there was documented benefit. I'm giving you a link to the " print " version as that link is shorter and won't get truncated in email. You may need to go through free registration to view via Medscape, but worth the effort, IMO. If you need more articles, there are others that report benefit from various supplements and cofactors in the cocktail, but this is the most thorough one I've seen. http://www.medscape.com/viewarticle/410871_print Barbara > I am on disability so having the mito cocktail covered by my insurance is > essential otherwise I cannot afford it. I cannot find the 3 published articles > that my insurance company requires to prove it is helpful. What can I do or > where can I turn for information? I need help. Thank you. > > a > Quote Link to comment Share on other sites More sharing options...
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