Guest guest Posted October 16, 2003 Report Share Posted October 16, 2003 Hi, I wanted to ask all of you how you go about determining what supplements you give your children for their mito diseases? I have found very little support from any doctor as far as dosage and measuring/monitoring progress or any kind of body activity based on the supplements. Dr. Shoffner gave us the generic list of supplements to choose from and our neurologist, Dr. Goldstein, seemed to kind of OK whatever ones I wanted to give him, but I have to believe there is a way to do monthly blood or urine tests to measure certain levels of elements in the body to see if there is too much/too little, etc. If anyone has any more information than 'you can try these and see if you think they are helping', please let me know. I feel like I'm shooting in the dark and certainly don't want to be giving something that could potentially harm him without knowing the real effects its having in his body. Thanks in advance for any insight you can provide. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 16, 2003 Report Share Posted October 16, 2003 hi ashley, We went straight to Dr. Cohen after getting our diagnosis. One of the mito docs are your best reference for what your child's specific needs are. We were told not to start any supplements until we saw a mito doc as adding certain ones could do more harm than good in some children. It was hard to wait for our appt to start anything but well worth it for all the info we received. Yes there is specific testing that can be done to see which supplements your child needs. They are run based on diagnosis, symptoms and overall health(or lack of) for each individual child. I know that there are other great mito docs out there too. We were just closest to Cleveland. Hope this helps, AnnMarie- possible mito Married to my best friend Rick, mom of (14), (11), Cassandra(5) and Joe(3 1/2) - complex IV, lactic acidosis, CP, tethered chord syndrome, dysautonomia, and a smile that never quits :-) ashleydilorenzo@... wrote: > Hi, > > I wanted to ask all of you how you go about determining what > supplements you give your children for their mito diseases? I have > found very little support from any doctor as far as dosage and > measuring/monitoring progress or any kind of body activity based on > the supplements. Dr. Shoffner gave us the generic list of > supplements to choose from and our neurologist, Dr. Goldstein, seemed > to kind of OK whatever ones I wanted to give him, but I have to > believe there is a way to do monthly blood or urine tests to measure > certain levels of elements in the body to see if there is too > much/too little, etc. > > If anyone has any more information than 'you can try these and see if > you think they are helping', please let me know. I feel like I'm > shooting in the dark and certainly don't want to be giving > something that could potentially harm him without knowing the real > effects its having in his body. > > Thanks in advance for any insight you can provide. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 17, 2003 Report Share Posted October 17, 2003 - Our specialist gave us a specific prescription of vitamins which we have compounded into a liquid (The Apothecary;Bethesda,MD)since Abbey is 3. Obviously, every child is different but I'll tell you what Abbey takes: Coenzyme Q10 12mg/ml Vitamin E 25IU/ml Vitamin C 50mg/ml Thiamine 25mg/ml Lipoic acid 15mg/ml Riboflavin 25mg/ml In addition she takes Carnitine and 1 multi-vitamin every day. Hope this helps you. Kris Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 23, 2003 Report Share Posted October 23, 2003 Thank you for your reply. Do you know what tests were run? I have seen Dr. Shoffner and he gave me a list of possible supplements, but they are all generic to mito problems so I'm not sure where to turn to get specific tests for our son's condition. Were they metabolic tests or what? Thanks. > > > Hi, > > > > I wanted to ask all of you how you go about determining what > > supplements you give your children for their mito diseases? I have > > found very little support from any doctor as far as dosage and > > measuring/monitoring progress or any kind of body activity based on > > the supplements. Dr. Shoffner gave us the generic list of > > supplements to choose from and our neurologist, Dr. Goldstein, seemed > > to kind of OK whatever ones I wanted to give him, but I have to > > believe there is a way to do monthly blood or urine tests to measure > > certain levels of elements in the body to see if there is too > > much/too little, etc. > > > > If anyone has any more information than 'you can try these and see if > > you think they are helping', please let me know. I feel like I'm > > shooting in the dark and certainly don't want to be giving > > something that could potentially harm him without knowing the real > > effects its having in his body. > > > > Thanks in advance for any insight you can provide. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 23, 2003 Report Share Posted October 23, 2003 where do you live? Are you able to travel to see on of the mitochondrial specialists? There is a list of labs that they do to determine mito disease on the umdf.org website . I'm not sure if the other ones are there. Our son had the coenzymeq-10 levels done - blood and urine, amino acid blood and urine, acylcarnitine blood and urine, lactic acid/lactate... these were done on our first visit to cleveland. I know some ppl have many more tests run based on their diagnosis and the symptoms. Our son is very mildly affected. He is only on the Co-Q10, carnitor and a multivitamin right now for supplements. He also drinks pediasure (w/ 2 added scoops of baby formula) 2 x a day orally and is on a normal diet. It sounds like you really need to have your son seen by a mitochondrial specialist who can regularly follow his care and do the necessary tests for him. You can call the UMDF (United Mitochondrial Disease Foundation) with the number on their website to find one that is closest to you. AnnMarie- possible mito Married to my best friend Rick, mom of (14), (11), Cassandra(5) and Joe(3 1/2) - complex IV, lactic acidosis, CP, tethered chord syndrome, dysautonomia, and a smile that never quits :-) ashleydilorenzo@... wrote: Thank you for your reply. Do you know what tests were run? I have seen Dr. Shoffner and he gave me a list of possible supplements, but they are all generic to mito problems so I'm not sure where to turn to get specific tests for our son's condition. Were they metabolic tests or what? Thanks. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 24, 2003 Report Share Posted October 24, 2003 , there is a place in TX where they do blood tests to see what the white cells do with various nutrients to know not just what's in the blood stream but what the cells are using or can use. It's called SpectraCell Laboratories, Inc. The last phone # I have for them is and they have a website too. Scoggins Re: mito cocktail Thank you for your reply. Do you know what tests were run? I have seen Dr. Shoffner and he gave me a list of possible supplements, but they are all generic to mito problems so I'm not sure where to turn to get specific tests for our son's condition. Were they metabolic tests or what? Thanks. > > > Hi, > > > > I wanted to ask all of you how you go about determining what > > supplements you give your children for their mito diseases? I have > > found very little support from any doctor as far as dosage and > > measuring/monitoring progress or any kind of body activity based on > > the supplements. Dr. Shoffner gave us the generic list of > > supplements to choose from and our neurologist, Dr. Goldstein, seemed > > to kind of OK whatever ones I wanted to give him, but I have to > > believe there is a way to do monthly blood or urine tests to measure > > certain levels of elements in the body to see if there is too > > much/too little, etc. > > > > If anyone has any more information than 'you can try these and see if > > you think they are helping', please let me know. I feel like I'm > > shooting in the dark and certainly don't want to be giving > > something that could potentially harm him without knowing the real > > effects its having in his body. > > > > Thanks in advance for any insight you can provide. > > > > Please contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 4, 2003 Report Share Posted November 4, 2003 Thanks . That sounds like what I am looking for. I'll contact them. > > > > > Hi, > > > > > > I wanted to ask all of you how you go about determining what > > > supplements you give your children for their mito diseases? I > have > > > found very little support from any doctor as far as dosage and > > > measuring/monitoring progress or any kind of body activity based > on > > > the supplements. Dr. Shoffner gave us the generic list of > > > supplements to choose from and our neurologist, Dr. Goldstein, > seemed > > > to kind of OK whatever ones I wanted to give him, but I have to > > > believe there is a way to do monthly blood or urine tests to > measure > > > certain levels of elements in the body to see if there is too > > > much/too little, etc. > > > > > > If anyone has any more information than 'you can try these and > see if > > > you think they are helping', please let me know. I feel like I'm > > > shooting in the dark and certainly don't want to be giving > > > something that could potentially harm him without knowing the real > > > effects its having in his body. > > > > > > Thanks in advance for any insight you can provide. > > > > > > > > > > > Please contact mito-owner with any problems or questions. > > Quote Link to comment Share on other sites More sharing options...
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