Guest guest Posted November 17, 2004 Report Share Posted November 17, 2004 Hi , My son has both of these. It is my understanding that the complex I is his energy crisis in the body and the oxidation is basically his body not getting oxygen. Trying to keep a stress-free lift, not overly exertion and trying to keep him well helps with slowing the progression down. Darlene Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 17, 2004 Report Share Posted November 17, 2004 Hi. I lurk on this list and post sometimes. What they are talking about is SCADD which 2 of my kids and I have. Please let me help you. What is the best way to contact you? Jill Jill Levy Fisch National Director of Education and Awareness Save Babies Through Screening Foundation SCADD Family Scarsdale, NY www.savebabies.org Can anyone help me I have posted here before. My daughter is named Kierra. She had muscle and skin biopsies done in July. After thinking that she did not have mito. The doctors called me today and said that they think that Kierra has complexI, but will have to wait atleast 2 more weeks for Mayo to confirm this. They told me that Kierra has Fatty Oxidation short change acyl coa dehydrogenase deficincey. And gace me some web site to go to for more info. Is this something bad? Anyone in the group know what this is? Please help me. I try to read info off web pages, but it is too much to understand. If anyone can talk to me about this in parent terms, I would love it. Thank you Please contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 17, 2004 Report Share Posted November 17, 2004 SCADD is a fatty acid oxidation defect in which the cellular enzyme that processes certain fatty acids is either missing or working at a diminished capacity. As far as I know it has nothing to do with the body not getting enough oxygen. Hope this helps. Jill Fisch SCADD Family Scarsdale, NY Re: Can anyone help me Hi , My son has both of these. It is my understanding that the complex I is his energy crisis in the body and the oxidation is basically his body not getting oxygen. Trying to keep a stress-free lift, not overly exertion and trying to keep him well helps with slowing the progression down. Darlene Please contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 17, 2004 Report Share Posted November 17, 2004 SCADD is a fatty acid oxidation defect in which the cellular enzyme that processes certain fatty acids is either missing or working at a diminished capacity. As far as I know it has nothing to do with the body not getting enough oxygen. Hope this helps. Jill Fisch SCADD Family Scarsdale, NY Re: Can anyone help me Hi , My son has both of these. It is my understanding that the complex I is his energy crisis in the body and the oxidation is basically his body not getting oxygen. Trying to keep a stress-free lift, not overly exertion and trying to keep him well helps with slowing the progression down. Darlene Please contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 17, 2004 Report Share Posted November 17, 2004 , We are also looking at a fatty oxidation dehydroginase disorder for both of my kiddos. I've gotten alot of good info on it from UMDF's archives, as well as the FOD (fatty oxidation disorder) website. Hope this helps. ruth mito mom to Mitch (9 1/2) and Lexi (6 1/2), both mito affected and my treasures Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 17, 2004 Report Share Posted November 17, 2004 , Sorry, i should have read your post a little more carefully and i would have seen the part about putting things in "parent" terms. The docs have told us that PDHD (pyruvate dehydroginase disorder), which is the FOD we are dealing with, causes a breakdown in the mitochondria's ability to use pyruvate (in your daughter's case, that would hold tru for acyl co-a) in breaking down the fats and sugars the body takes in and turning them into usable energy. There are short chain, medium chain, long chain, and very long chain FOD's, all with different symtoms and outcomes. I'm not in top form tonight, and so am not going to be able to give a good definition for that part of it...anyone care to help me out? Okay, hope this was at least clear as mud. ruth Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 17, 2004 Report Share Posted November 17, 2004 Jill, you can look under fod on the web or under mitochondrial disoders for more info. they use alot of vitamens to try to helplike coenime Q10,b-50 and boitin.carnitor isalso a good help in fueling the muscles. I hope this helped?Jill Fisch wrote: SCADD is a fatty acid oxidation defect in which the cellular enzyme that processes certain fatty acids is either missing or working at a diminished capacity. As far as I know it has nothing to do with the body not getting enough oxygen. Hope this helps.Jill FischSCADD FamilyScarsdale, NY Re: Can anyone help meHi , My son has both of these. It is my understanding that the complex I ishis energy crisis in the body and the oxidation is basically his body notgetting oxygen. Trying to keep a stress-free lift, not overly exertion andtrying to keep him well helps with slowing the progression down. DarlenePlease contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 18, 2004 Report Share Posted November 18, 2004 We all take carnitor and riboflavin. Matt has a g tube. The carnitor and ribo seemed to have help my kids. My dad however, who has it too, isn't doing so well. Up until a few months ago Matt was getting sick a lot and spent too much time in the hospital. I am hoping this winter is better!!!! Thanks, Jill Jill Fisch SCADD Family Scarsdale, NY Re: Can anyone help me Hi , My son has both of these. It is my understanding that the complex I is his energy crisis in the body and the oxidation is basically his body not getting oxygen. Trying to keep a stress-free lift, not overly exertion and trying to keep him well helps with slowing the progression down. Darlene Please contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 18, 2004 Report Share Posted November 18, 2004 We all take carnitor and riboflavin. Matt has a g tube. The carnitor and ribo seemed to have help my kids. My dad however, who has it too, isn't doing so well. Up until a few months ago Matt was getting sick a lot and spent too much time in the hospital. I am hoping this winter is better!!!! Thanks, Jill Jill Fisch SCADD Family Scarsdale, NY Re: Can anyone help me Hi , My son has both of these. It is my understanding that the complex I is his energy crisis in the body and the oxidation is basically his body not getting oxygen. Trying to keep a stress-free lift, not overly exertion and trying to keep him well helps with slowing the progression down. Darlene Please contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
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