Guest guest Posted March 30, 2004 Report Share Posted March 30, 2004 On my box from the health food store it says Pure N, N-Dimethylglycine. It also says on the box, a supplement to support endurance and immune system function* Promotes oxygen utilization, reduces lactic acid buildup during workouts, improves immune defense, energy enhancing, improves athletic performance, supports glucose metabolism* all these have the stars after each one and on the bottome it says this statement has not been evaluated by the Food andDrug Administration. This product is not intended to diagnose, treat, cure or prevent any disease. I decided to get more information after Savage posted about it. They get theirs from some one else. I get mine from the health food store and it is from FoodScience. It is pure DMG. That is what our nurse said we needed to get. I guess there are others out there that is not pure DMG. Nerenhausen mom to Leah albregra@... wrote: Thank you for sharing your experience with me. One question, what is DMG? Please contact mito-owner with any problems or questions. This message scanned for viruses by Corecomm Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 30, 2004 Report Share Posted March 30, 2004 , Autistic tendencies are sometimes seen in kids with mitochondrial disorders. I think that the behaviors are secondary to problems with energy production in certain areas of the brain. It can be a problem to have an autism spectrum diagnosis prior to getting a full metabolic investigation, but it less of a problem when autistic tendencies are noted in children who are already diagnosed with mito. Generally kids with mito who develop autistic tendencies use the medical label of encephalopathy with autistic tendencies. I do encourage parents to keep the 299 autism code out of their children's medical records to prevent insurance battles over coverage. It is less of a problem to use the autism label for school purposes. Some people use OHI (other health impaired) with autistic tendencies. In Texas, kids with autism have access to the "seven autism items" that make it much easier to get a one on one aide, if needed, summer services, and other services like OT. Cognitive developmental delay, language developmental delay, GI symptoms, hypotonia are 4 of the top six problems that are reported by parents of kids with mito and these problems are common in kids with Autism Spectrum Disorders. Dr. Kelley is a strong believer that some kids who are initially diagnosed with autism spectrum disorders might have mitochondrial disorders. 10. Kelley Kennedy Krieger Insitute, Baltimore, MD~`~s Hopkins University kelle_ri Abnormalities of Mitochondrial Metabolism in Children with Autistic Spectrum Disorders Although developmental delay is a common characteristic of children with disorders of mitochondrial metabolism, classical autism, Asperger syndrome, and pervasive developmental disorder (PDD) have not commonly been associated with mitochondrial disease. Because our institution serves a large number of children with developmental disabilities, we have had the opportunity to diagnose many metabolic diseases among children with autistic spectrum disorders, including defects of organic acid, sterol, and mitochondrial metabolism. Among these, mitochondrial disease is the most common diagnostic category and represents a clinically significant fraction of autistic children. Although we find a variety of autistic phenotypes to have associated mitochondrial abnormalities, the most common is nonspecific PDD, typically of a form that manifests language and cognitive regression or stagnation during the second year. Most surprising among multiplex families is that the biochemical and clinical makers of mitochondrial disease often segregate in an autosomal dominant manner. Although no molecular lesion has yet been found in the autosomal dominant families, the biochemical findings are most consistent with abnormal mitochondrial complex I activity. Moreover, when identified below the age of two years, affected children often respond to therapy designed to augment complex I activity. We propose that, like the basal ganglia, areas of the brain important in language development and personal social interaction are especially vulnerable in the first two years to injury mediated by defects of mitochondrial energy metabolism, and that early and careful evaluation of autistic children for these more subtle mitochondrial disturbances may rescue them from more severe brain injury. My son was diagnosed with PDD/NOS after he lost language and motor skills when he was 4. His regression was so late that no one should have been thinking autism, but once the first professional stamped "autism" on his file, he got the standard autism work-up--nearly 4 month wait to see a neuro, etc, etc. I don't think that the psychologist believed me when I said that Evan had typical speech before his 4th birthday (We moved to Dallas just after Evan's 3rd birthday). When Evan was finally seen by the neuro, he said that Evan didn't have autism, just speech delays, and he ordered no further diagnostic work-up. He bounced back from the regression, but he continued to have weakness, fatigue, loss of muscle strength and tone, and trouble gaining weight. It was difficult to get metabolic testing because the "Practice Parameters" for autism don't call for metabolic work-ups. After adding the mito cocktail, carnitor, and IV glutathione, Evan is doing very well. He is 12 years old and is an honor student in 6th grade. There are times when he just barely has enough energy to make it through the day, and when he is sick or has extra activities, he sometimes goes into ketosis. As long as Evan is rested, well fed, and not sick, he does great. We have to limit his activities or he gets headaches and irritability. We tried a shortened school day 4 years ago, and it worked out so well that we have been doing it ever since. He goes to school at 8:30 (the last bell rings at 8:45) and finishes at 2:15. He doesn't miss any core classes (just art and PE). He sometimes gets headaches during his last class. It doesn't help that math is his last class and classes are 90 minutes long. His math teacher really works them hard so there is no down time. Next year I will request that math be his first class of the morning or his first after lunch. We do have to be very careful when Evan is sick. So far he has done OK when we increase his carnitor and push gatorade. His behavior was very off during his last illness. I think that I will push for IV hydration next time. I read somewhere that each degree rise in temperature above 98.6 increases energy demands by about 10 percent. It is easy to see how our kids run into problems quickly with only moderate fevers. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 30, 2004 Report Share Posted March 30, 2004 , Autistic tendencies are sometimes seen in kids with mitochondrial disorders. I think that the behaviors are secondary to problems with energy production in certain areas of the brain. It can be a problem to have an autism spectrum diagnosis prior to getting a full metabolic investigation, but it less of a problem when autistic tendencies are noted in children who are already diagnosed with mito. Generally kids with mito who develop autistic tendencies use the medical label of encephalopathy with autistic tendencies. I do encourage parents to keep the 299 autism code out of their children's medical records to prevent insurance battles over coverage. It is less of a problem to use the autism label for school purposes. Some people use OHI (other health impaired) with autistic tendencies. In Texas, kids with autism have access to the "seven autism items" that make it much easier to get a one on one aide, if needed, summer services, and other services like OT. Cognitive developmental delay, language developmental delay, GI symptoms, hypotonia are 4 of the top six problems that are reported by parents of kids with mito and these problems are common in kids with Autism Spectrum Disorders. Dr. Kelley is a strong believer that some kids who are initially diagnosed with autism spectrum disorders might have mitochondrial disorders. 10. Kelley Kennedy Krieger Insitute, Baltimore, MD~`~s Hopkins University kelle_ri Abnormalities of Mitochondrial Metabolism in Children with Autistic Spectrum Disorders Although developmental delay is a common characteristic of children with disorders of mitochondrial metabolism, classical autism, Asperger syndrome, and pervasive developmental disorder (PDD) have not commonly been associated with mitochondrial disease. Because our institution serves a large number of children with developmental disabilities, we have had the opportunity to diagnose many metabolic diseases among children with autistic spectrum disorders, including defects of organic acid, sterol, and mitochondrial metabolism. Among these, mitochondrial disease is the most common diagnostic category and represents a clinically significant fraction of autistic children. Although we find a variety of autistic phenotypes to have associated mitochondrial abnormalities, the most common is nonspecific PDD, typically of a form that manifests language and cognitive regression or stagnation during the second year. Most surprising among multiplex families is that the biochemical and clinical makers of mitochondrial disease often segregate in an autosomal dominant manner. Although no molecular lesion has yet been found in the autosomal dominant families, the biochemical findings are most consistent with abnormal mitochondrial complex I activity. Moreover, when identified below the age of two years, affected children often respond to therapy designed to augment complex I activity. We propose that, like the basal ganglia, areas of the brain important in language development and personal social interaction are especially vulnerable in the first two years to injury mediated by defects of mitochondrial energy metabolism, and that early and careful evaluation of autistic children for these more subtle mitochondrial disturbances may rescue them from more severe brain injury. My son was diagnosed with PDD/NOS after he lost language and motor skills when he was 4. His regression was so late that no one should have been thinking autism, but once the first professional stamped "autism" on his file, he got the standard autism work-up--nearly 4 month wait to see a neuro, etc, etc. I don't think that the psychologist believed me when I said that Evan had typical speech before his 4th birthday (We moved to Dallas just after Evan's 3rd birthday). When Evan was finally seen by the neuro, he said that Evan didn't have autism, just speech delays, and he ordered no further diagnostic work-up. He bounced back from the regression, but he continued to have weakness, fatigue, loss of muscle strength and tone, and trouble gaining weight. It was difficult to get metabolic testing because the "Practice Parameters" for autism don't call for metabolic work-ups. After adding the mito cocktail, carnitor, and IV glutathione, Evan is doing very well. He is 12 years old and is an honor student in 6th grade. There are times when he just barely has enough energy to make it through the day, and when he is sick or has extra activities, he sometimes goes into ketosis. As long as Evan is rested, well fed, and not sick, he does great. We have to limit his activities or he gets headaches and irritability. We tried a shortened school day 4 years ago, and it worked out so well that we have been doing it ever since. He goes to school at 8:30 (the last bell rings at 8:45) and finishes at 2:15. He doesn't miss any core classes (just art and PE). He sometimes gets headaches during his last class. It doesn't help that math is his last class and classes are 90 minutes long. His math teacher really works them hard so there is no down time. Next year I will request that math be his first class of the morning or his first after lunch. We do have to be very careful when Evan is sick. So far he has done OK when we increase his carnitor and push gatorade. His behavior was very off during his last illness. I think that I will push for IV hydration next time. I read somewhere that each degree rise in temperature above 98.6 increases energy demands by about 10 percent. It is easy to see how our kids run into problems quickly with only moderate fevers. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 23, 2004 Report Share Posted April 23, 2004 I also have a 22 mo. old son with mito that has me concerned about autistic tendencies. doesn't verbally communicate and only occasionally mimics words that aren't intelligible. His receptive language seems to be coming along though. He also has sensory integration dysfunction and I wonder if that contributes to some of the behaviors that concern me. My biggest concern is that he rarely reciprocates affection. If I asked him to hug/kiss me 10 times (not consecutively, over a period of 48 hours or so), he would most likely only respond once. He doesn't like to be held although he tolerates sitting in my lap. He seldom seeks comfort from me, preferring to cry alone on the floor. He interacts with his siblings and their friends but often inappropriately (biting, scratching, swatting, etc.). This is only a partial list of the behaviors that concern me, but I could go on forever:> I asked our OT what she thinks and she doesn't think it's autism but I'm certainly concerned. Quote Link to comment Share on other sites More sharing options...
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