Guest guest Posted March 30, 2004 Report Share Posted March 30, 2004 Thank you for sharing your experience with me. One question, what is DMG? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 30, 2004 Report Share Posted March 30, 2004 Thanks for the info. I will go to the library to see if I can find these books. No, Grace does not see an OT. She is going to start seeing a speech therapist soon, though. I am with high hopes that it will work. Don't they need to have some physical limitations to be going to an OT, Grace is age appropriate as far as physically able? I thought I would bring this up with her normal pediatrician. She is most aware of her acting up with her. Thank you again. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 30, 2004 Report Share Posted March 30, 2004 , Thank you so much for the information. I was just asked today to find some info regarding autistic traits in relation to metabolic disorders. Do you mind if I print this to take along to her speech eval.? (The person doing it is supposed to have incredible knowledge on autism.) I am glad to see that your son is doing so well in school. I think I worry about the school years more for her than any. (And she is not even two yet.) I just know how cruel kids can be, and how some teachers stereotype a child so fast. Thank you again. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 30, 2004 Report Share Posted March 30, 2004 Grace and Sheldon do have a lot in common. Here are a few quick thoughts. Sheldon probably would not be diagnosed as 'autistic' right now but is definitely autistic spectrum (PDD). I think it's caused mostly by the sensory issues caused by the mito, does Grace receive OT? Sheldon's OT is great and does a lot of sensory stuff with him. The perseverative behaviors are probably worse out of the house because of overstimulation. Jean Ayres' book 'Sensory Integration and the Child' is a good book on sensory integration disorder. Hard to get a copy of though, I borrowed a copy from our OT. We have worked hard to get Sheldon to want to be with us and to want to communicate with us. We have a room where his EI teachers (and me when I have a chance) work with him that is very unstimulating. We have very loosely followed Barry Kaufman's Son-Rise methods, a good book about an autistic child who was 'recovered' by his parents. Sheldon also does not like to be touched, especially to be measured or in any way by doctors. He lets us hold him most of the time though, his sensory hypersensitivities seem much worse after he's been sick. Sheldon sees a developmental pediatrician, I think they're the ones who would diagnose autism but other docs probably do too. Sheldon does have some receptive language now (he couldn't show us that he did until a number of months ago) but cannot say anything right now. He toe-walked a little for a while but doesn't any more. I have been noticing some unusual behavior with Grace lately, but I just kept relying on it being that she is almost two. But, her nurse from the county came yesterday and mentioned something that struck me. First of all, lately she has been very clumsy. She had a stone cold normal EEG so we know it is not seizures (thank god). We switched her allergy medicine and it helped some but it is now getting bad again. Secondly her language has been a big issue. We know she is understanding everything we say, yet she knows less than 5 words. She is learning to sign and she uses it some (usually when she wants something). Also when she is out in public she practically crawls into a little shell (although not always, but most of the time) she will not use any words nor will use her signs. She will clam up if someone tries to touch her (doctor visits are not fun). And then about a month ago she started toe walking. She has been walking normal for since 12 months now at 21 months she is on her toes, again not all the time. (I did not think this was a big deal but just asked the nurse because I had heard it was sometimes a sign of muscle control.) All of this in mind I was telling the nurse how she was doing (her 22 month assessment). She had mentioned a couple of things to contribute to the toe walking and one of them was autism. She said this was the first to strike her. She did not tell me that this is what it is, but suggested I bring it up with someone. I started looking it up on the Internet and she has so many of the characteristics. (We always think it is funny when she spins in circles, how did we know.) This is why I come to you guys. I know autism is very common with mito, but how mild can it be? When she is home she is like a normal toddler, she laughs and is affectionate. Yes, she is totally different when she is out of her element, but can't that just be her personality. I would love it if anyone who has a child with autism (the more mild the better) would share there story. How is it diagnosed? Is your child " labeled " even if it is mild? Is there still the chance of going to a normal school classroom? I am really afraid of pursuing this, if it will only hinder her with a label that may not totally fit. I am trying so hard to give her a normal life. I know she will always have her problems, but we try to not show them off. Any advice would be greatly appreciated. Thank you in advance. Mommy to Grace Please contact mito-owner with any problems or questions. Yahoo! Groups Links To visit your group on the web, go to: http://groups.yahoo.com/group/Mito/ Quote Link to comment Share on other sites More sharing options...
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 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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