Guest
I thought I would post some info and a link for any of you who are interested. I think it may be applicable for alot of your children especially the ones who have obvious immune problems, although some of the children with immune abnormalities are never sick.
I know all of this is very confusing especially since I know alot of us have been told that our childrens problems have nothing to do with their immune system. I can tell you that this is no longer alternative medicine. Alot of very credible researchers and clinicians have become involved in this who just a couple of years ago would not have touched this illness with a ten foot pole.
It is so credible that a recent conference with experts from around the world, was sponsored by The Medical Society of State of New York.
The speakers included:
Jeffery Galpin, M.D(NIDS board member) a Medicine and Infectious Disease Specialist, is currently a Clinical Associate Professor of Medicine at the University of Southern Calif. A renown expert on gene therapy for AIDS and the application of immune modulation in disorders such as PML,MS, and ALS.
Michael Goldberg, M.D.,F.A.A.P.,Director of the NIDS Medical Advisory Board and is on the clinical teaching staff at both UCLA and Cedars-Sinai Hospitals. He has 20 years experience treating autism,ADHD and CFIDS.
Nancy Klimas, M.D.,(NIDS board member) is an immunology researcher affiliated with the University of Miami Medical Center and the Veterans Administration Hospital. She is also a member of the National Institutes of Health Advisory Committee.
Audrius Plioplys,M.D.,FRCPC,FAAP,CMD(NIDS board member)is a pediatrician and neurologist who studied at the Mayo Clinic. He is currently the Medical Director of four pediatric skilled nursing facilities and the Director of Child Neurology of the Humana-Michael Reese Health Plan in Chicago. He has published over 45 neurology and pediatric articles and was one of the first to report immunological activation markers in autism.
Vijendra Singh(Conference Faculty) a Ph.D pharmacy researcher from the University of Michigan, presented data related to his auto-immunity model for autism.
There were other speakers and there are more NIDS members, but my arms are getting tired.
There is a newsletter that you can download for free at the MAT website, which gives highlights of the recent conference.
There are also plans which are still being finalized, to start the NIDS immune profiling studies. They are in the process of setting of the drawing stations, info in newsletter. My son is not eligible until they get to stage II trials because he is already on immune therapy.
My son at this point is doing probably the best he has ever done in his life. If you could have seen him last year, you would not believe this is the same child. Is he cured yet,no, but his Obsessive Compulsive Disorder (OCD) went away, we haven't seen any of the uncontrollable rages. He seems to be doing better and better. Will his symptoms come back, I don't know but I'm petrified and keeping my fingers crossed. I do know that if he had continued like he was last year, he was getting so out of control. He was not at school at all after Dec. The slightest thing would send him into a rage, hitting, kicking,biting, throwing things.
Information on the NIDS Medical Board is at https://web.archive.org/web/20140518004456/http://www.nids.net/
I have noticed that they only have six board members listed, last I heard there were eight and more possibly joining.
FWIW
Cheryl
10yo difficult child/almost easy child with NIDS
I know all of this is very confusing especially since I know alot of us have been told that our childrens problems have nothing to do with their immune system. I can tell you that this is no longer alternative medicine. Alot of very credible researchers and clinicians have become involved in this who just a couple of years ago would not have touched this illness with a ten foot pole.
It is so credible that a recent conference with experts from around the world, was sponsored by The Medical Society of State of New York.
The speakers included:
Jeffery Galpin, M.D(NIDS board member) a Medicine and Infectious Disease Specialist, is currently a Clinical Associate Professor of Medicine at the University of Southern Calif. A renown expert on gene therapy for AIDS and the application of immune modulation in disorders such as PML,MS, and ALS.
Michael Goldberg, M.D.,F.A.A.P.,Director of the NIDS Medical Advisory Board and is on the clinical teaching staff at both UCLA and Cedars-Sinai Hospitals. He has 20 years experience treating autism,ADHD and CFIDS.
Nancy Klimas, M.D.,(NIDS board member) is an immunology researcher affiliated with the University of Miami Medical Center and the Veterans Administration Hospital. She is also a member of the National Institutes of Health Advisory Committee.
Audrius Plioplys,M.D.,FRCPC,FAAP,CMD(NIDS board member)is a pediatrician and neurologist who studied at the Mayo Clinic. He is currently the Medical Director of four pediatric skilled nursing facilities and the Director of Child Neurology of the Humana-Michael Reese Health Plan in Chicago. He has published over 45 neurology and pediatric articles and was one of the first to report immunological activation markers in autism.
Vijendra Singh(Conference Faculty) a Ph.D pharmacy researcher from the University of Michigan, presented data related to his auto-immunity model for autism.
There were other speakers and there are more NIDS members, but my arms are getting tired.
There is a newsletter that you can download for free at the MAT website, which gives highlights of the recent conference.
There are also plans which are still being finalized, to start the NIDS immune profiling studies. They are in the process of setting of the drawing stations, info in newsletter. My son is not eligible until they get to stage II trials because he is already on immune therapy.
My son at this point is doing probably the best he has ever done in his life. If you could have seen him last year, you would not believe this is the same child. Is he cured yet,no, but his Obsessive Compulsive Disorder (OCD) went away, we haven't seen any of the uncontrollable rages. He seems to be doing better and better. Will his symptoms come back, I don't know but I'm petrified and keeping my fingers crossed. I do know that if he had continued like he was last year, he was getting so out of control. He was not at school at all after Dec. The slightest thing would send him into a rage, hitting, kicking,biting, throwing things.
Information on the NIDS Medical Board is at https://web.archive.org/web/20140518004456/http://www.nids.net/
I have noticed that they only have six board members listed, last I heard there were eight and more possibly joining.
FWIW
Cheryl
10yo difficult child/almost easy child with NIDS