Guest guest Posted February 16, 2005 Report Share Posted February 16, 2005 He is six and half years old. Recently diagnosed as having mitochondrial disorder. According to his Doctor, there is no treatment. This has devasted us. I am thinking about alternative medicine like hyperbaric oxygenation treatment. Has anybody heard about it? Will it work? Please help us. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 23, 2005 Report Share Posted February 23, 2005 You need more information as to what type of mito disorder your son is dealing with....there are so many kinds all with differing prognoses. Some *do* respond well to treatment. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 23, 2005 Report Share Posted February 23, 2005 There are treatments for mitochondrial disorders, but no cure. The treatments doctors use are specifically tailored for mitochondrial disease (as far as I know, hyperbaric oxygenation is not, but don't take my word on that). What I have found is that there are lots of supposed alternative therapies that practioners will make you feel will help, but unless they really treat the problem of defective energy metabolism, they will probably be a waste of your money and time. Please see the website for the United Mitochondrial Disease Foundation for lots of tips on what to be careful about: www.umdf.org. Once you understand what mito disease is you can better work to prevent problems from arising. How much you can control things all depends, of course, on how severe the disease is in your child. But there are things you can try to do. There are supplements and medicines that can help, but every person is different and what helps one won't necessarily help another. My son, who was diagnosed at the same age as yours, has been very helped by taking Carnitor (a prescription synthetic amino acid) and lots of supplements: Co Q10, Lipoic Acid, Riboflavin, and, most recently, a very brand new supplement called Magnesium Orotate that not many doctors even know about yet. (We found out about it at the UMDF conference which I highly recommend you attend, with your husband if you are married. We are so glad we did last year.) There are others he tried, but they didn't help him. Again, everyone is different. You REALLY need to see a mitochondrial expert like Dr. Cohen at the Cleveland Clinic, Dr. Haas in SanDiego, or one of the few others- I don't know names, but people on this message board will. Or you can call the UMDF for names of doctors in your state that have been recommended by patients/parents. Please email me personally if I can be of any more assistance. It was a very long and lonely road to diagnosis for us. Craig is doing so much better with the help we received. I would be glad to help any way I can. Donna Still, so much of it is out of our control. My older son He is six and half years old. Recently diagnosed as having mitochondrial disorder. According to his Doctor, there is no treatment. This has devasted us. I am thinking about alternative medicine like hyperbaric oxygenation treatment. Has anybody heard about it? Will it work? Please help us. Please contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
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