Guest guest Posted May 26, 1999 Report Share Posted May 26, 1999 I was wondering if anyone could share a few good sites on Autism with me. I need some info for a friend, and I know that this topic comes up frequently here and thought I'd ask before I start searching. Thanks, Jeannine Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 21, 1999 Report Share Posted June 21, 1999 Kathy F. this post caught my eye as you say they want to rule out pyruvate dehydrogenase as a cause of his autism. I started on this list with the suspician that was our mito defect and if I have it figured out right that is called complex 1. We have the ADHD with mild symptoms of autism in some members. He wants to hook autism with mito. People have said some feel autism is a more severe form of ADHD. Today I got some autism bks from the library as I picked a few up and they hit home and had good ideas for working with the kids and helping them in school and I think some of the strategys may help the boys I have. Who would I get hold of to talk to about the testing and get more infor about my thoughts from the people doing the testing? S. Re: autism >> Date: Wednesday, August 18, 1999 11:03 PM >> >> From: Hilandgang@... >> >> Anne, >> You hit it right on the head with that summary! Also, thanks for the tip >on >> Dr DiMauro. I'll have to pursue this, in all my spare time:} >> >> ruth >> >> --------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 21, 1999 Report Share Posted June 21, 1999 DA! Kathy, sometimes I can be so stupid. Every bit of information I asked you for is in your letter already. I was reacting terribly to Mc's morning burritos with the loads of yellow dye, etc. from this morning. I am up now with my wrists so " wired " feeling it is like someone took the nerves in them and is holding a live wire on them. I have taken the 2nd round of Alka-Seltzer Plus with the hot chocolate which is how I counter this and am waiting for it to help so I can try sleeping again. I'm sorry I read this and only got bits of it. I also think now (as I can think a little bit more) that Complex 1 is more Leigh's. Even tho I do the B1 shots, as far as I know I don't have Leigh's, but who knows. Again, accept my apologies for being a ditz. S. Re: autism >>> Date: Wednesday, August 18, 1999 11:03 PM >>> >>> From: Hilandgang@... >>> >>> Anne, >>> You hit it right on the head with that summary! Also, thanks for the tip >>on >>> Dr DiMauro. I'll have to pursue this, in all my spare time:} >>> >>> ruth >>> >>> --------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 21, 1999 Report Share Posted June 21, 1999 DA! Kathy, sometimes I can be so stupid. Every bit of information I asked you for is in your letter already. I was reacting terribly to Mc's morning burritos with the loads of yellow dye, etc. from this morning. I am up now with my wrists so " wired " feeling it is like someone took the nerves in them and is holding a live wire on them. I have taken the 2nd round of Alka-Seltzer Plus with the hot chocolate which is how I counter this and am waiting for it to help so I can try sleeping again. I'm sorry I read this and only got bits of it. I also think now (as I can think a little bit more) that Complex 1 is more Leigh's. Even tho I do the B1 shots, as far as I know I don't have Leigh's, but who knows. Again, accept my apologies for being a ditz. S. Re: autism >>> Date: Wednesday, August 18, 1999 11:03 PM >>> >>> From: Hilandgang@... >>> >>> Anne, >>> You hit it right on the head with that summary! Also, thanks for the tip >>on >>> Dr DiMauro. I'll have to pursue this, in all my spare time:} >>> >>> ruth >>> >>> --------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 21, 1999 Report Share Posted August 21, 1999 Ruth, Just getting back from 3 weeks away so mostly just deleting here. Anyway my son Bart (9) and I just had our blood sent to Dr. DiMauro at Columbia U in NYC and are apart of that study he is doing. No results as yet- just sent it in JUly . Anyway I had e-mailed the web person and many months later I got this reply. " We are involed in a research protocol where we are looking for possible mitochondria DNA mutations in patients with autism. This is strictly reseach and may take a long time before we have any results to report, but we do feel that, at least in some patients with autism, we may be able to identify some abnormalities. These studies require only a blood sample and we do not charge for the testeing. If you are interterested in participating in this stude, please ask your physician to contact us and we will arrange for the sample to be sent. He/She can call the laboratory at and ask for Dr. Dimauro or Dr. Shanske. " I sent this e-mail to our geneticist/developmental ped and she set it up pretty quickly. She said he is looking at the autism/mito link. He has some new piece of equipment that can sequence. But now I am confused because the letter says DNA mito and she said it's just the mito and wishes it were the DNA mito. Says we still need to get Rainbow Babies to run the skin biopsy and blood to rule out pyruvate dehydrongenase as underlying cause of his autism. She thinks we will get info on his case quite soon but of couse not on the entire study. She also says even if this comes out negative Bart could still have a mito disorder. Well, I went for it. Kathy F ---------- > From: Hilandgang@... > To: Mitoonelist > Subject: Re: autism > Date: Wednesday, August 18, 1999 11:03 PM > > From: Hilandgang@... > > Anne, > You hit it right on the head with that summary! Also, thanks for the tip on > Dr DiMauro. I'll have to pursue this, in all my spare time:} > > ruth > > --------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 21, 1999 Report Share Posted August 21, 1999 Ruth, Just getting back from 3 weeks away so mostly just deleting here. Anyway my son Bart (9) and I just had our blood sent to Dr. DiMauro at Columbia U in NYC and are apart of that study he is doing. No results as yet- just sent it in JUly . Anyway I had e-mailed the web person and many months later I got this reply. " We are involed in a research protocol where we are looking for possible mitochondria DNA mutations in patients with autism. This is strictly reseach and may take a long time before we have any results to report, but we do feel that, at least in some patients with autism, we may be able to identify some abnormalities. These studies require only a blood sample and we do not charge for the testeing. If you are interterested in participating in this stude, please ask your physician to contact us and we will arrange for the sample to be sent. He/She can call the laboratory at and ask for Dr. Dimauro or Dr. Shanske. " I sent this e-mail to our geneticist/developmental ped and she set it up pretty quickly. She said he is looking at the autism/mito link. He has some new piece of equipment that can sequence. But now I am confused because the letter says DNA mito and she said it's just the mito and wishes it were the DNA mito. Says we still need to get Rainbow Babies to run the skin biopsy and blood to rule out pyruvate dehydrongenase as underlying cause of his autism. She thinks we will get info on his case quite soon but of couse not on the entire study. She also says even if this comes out negative Bart could still have a mito disorder. Well, I went for it. Kathy F ---------- > From: Hilandgang@... > To: Mitoonelist > Subject: Re: autism > Date: Wednesday, August 18, 1999 11:03 PM > > From: Hilandgang@... > > Anne, > You hit it right on the head with that summary! Also, thanks for the tip on > Dr DiMauro. I'll have to pursue this, in all my spare time:} > > ruth > > --------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 21, 1999 Report Share Posted August 21, 1999 Kathy, This is so COOL! I am printing this out and giving it to my families with kids with autism on Monday! I wonder if they are still looking for volunteers??? WOW, thanks for the info. ruth Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.