Info for those who are interested

Discussion in 'Healthful Living / Natural Treatments Archive' started by -, Oct 8, 1999.

  1. 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
     
  2. Guest

    Well I do find this whole thing very interesting!! But the problem is that the doctors most people go to (me included) dont see this as normal medicine but as alternitave medicine. and when you have an HMO and have no choice of who to see, your stuck with the thick headed doctor's that think they know it all!
    I have not been able to get my girl tested for ANYTHING. well with the exception of a prick allergy test, big WHOOPIE. But no one will look into any thing else.!!! But they WILL give her any drug they can think of!

    So, I sure wish there was a way to get the doctor's that most of us use to realize this!!!!!!!!

    ------------------
    Nancy
    ODD/BIPOLAR/ADD Girl 6 1/2 yrs
    Off All medications
    Fav. Funny quote-"Yesterday I was a dog. Today I'm a dog. Tomorrow I'll probably
    still be a dog. There's so little hope for advancement."
    - Snoopy
    With Out GOD, my life would fall apart!!!!!
     
  3. Guest

    I know what you're saying, but there have been some parents who have gotten their doctors to look at this. Some are printing information or getting the videos of the conference to show their doctors that this is credible. There recently was a section added specifically for doctors who have questions.

    I don't know exactly what the guidelines are for the NIDS study, but that may be an option if one of the drawing stations is accessable. The only one I know about so far is in New Jersey. There is alot or red tape to go through to get this going.

    They are in the process of developing a national public relations campaign and have already had preliminary meetings with several pharmaceutical companies. They are working very hard to remove any obstacle to early application of clinical therapies for our children.

    There are immune modulators that the drug companies have already developed, that they are trying to get available for our children. That is what I am waiting for.

    I know that medicare has paid for some of the kids, I have Blue Cross and they pay. But its because my son has a medical diagnosis.
    Cheryl
     
  4. Guest

    Ok Im game!!! Tell me what to do!! Now My girl doesnt have Autisim. I noticed that the one thing I pulled up was about autism. But I honestly think that these disorders are all connected!! They have too many similar traits! Anyways, I have an HMO and my primary doctor controls where I go, and of course cant send me to a doctor unless it's an HMO doctor. I dont have Medicade medicare for my girl. Hubby makes too much [​IMG] She quailfy's for SSI benifits but.. he makes to much so we get ZIP.. So im stuck with the HMO doctor's. So any idea how to get one of them to WAKE up?
    Is this your pediatrician doctor that is doing this treatment? Or is it a Psyc doctor. I dont have my girl going to a psyc doctor, because all they do is counsel and drug her. Neither of which do any good for her!!
    Anyways, Im game for any ideas!!!!
    HELP MEEEE [​IMG] [​IMG]
    Email me too if you want!!
    Thanks

    ------------------
    Nancy
    ODD/BIPOLAR/ADD Girl 6 1/2 yrs
    Off All medications
    Fav. Funny quote-"Yesterday I was a dog. Today I'm a dog. Tomorrow I'll probably
    still be a dog. There's so little hope for advancement."
    - Snoopy
    With Out GOD, my life would fall apart!!!!!
     
  5. Guest

    I'm thinking, I'm thinking. I'm not sure what to do about an HMO, I have done my best to stay away from them.

    I know the Autism logo is confusing, but if you look at their NIDS emblem it also lists,Pervasive Developmental Disorder (PDD),Attention Deficit,Hyperactivity,learning disorders,language disorders and chronic fatigue syndrome. There was discussion on whether to change the name or have it become MAT for NIDS.

    The reason it started out as MAT is because most of the focus was originally on autism and unfortunately only the autism groups were recognizing this as a disease. The fact is that these kids with NIDS do not have autism or ADHD or whatever you want to call them but these are the names that people recognize. If you start looking at the autism or CFS symptoms you can see how much overlap in symptoms they have. My son doesn't have autism either.

    I tried the counseling route several times. The things they told me to do sounded really great in theory, but when my son was way out there in left field, forget it. All it was successful in doing was emptying my pocketbook.

    Our pediatrician is doing the treatment. He works at calming down the immune system and helping the brain work normally, not trying to control the brain or behavior. I did try working through a psyc. doctor. last year who was an expert in neuropharmacology, who was aware of the immune connection. He felt if you fixed what was wrong in the brain then the immune system would correct itself. It seemed to work at first, although we tried about 20 different medications, to find what would work. What I liked about him is that if there was any negative reaction he supplied you with an antidote. So at least you didn't have to deal with a child going beserk. In the long run that made my son alot worse. The one plus about that is that the school psyc. who still had a hard time accepting the immune connection, after reading a letter from psychiatrist saying that my son had an autoimmune problem that affected his moods,etc said now that makes sense. It didn't seem to make sense when two previous M.D.s said the same type of thing. Go figure that one. I guess because it was from one of his own kind.

    Gosh, what to tell you. Maybe we can hope that one of the drawing stations for the immune profiling study will be close enough to you. If I can think of something later I'll let you know.
    Cheryl
    10yo difficult child/almost easy child with NIDS
     
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