LA Times Article on Kutapressin

Discussion in 'Fibromyalgia Main Forum' started by meljackmom, Dec 16, 2003.

  1. meljackmom

    meljackmom New Member

    __ The Los Angeles Times/Orange County Edition __ DEC 14
    Dana Parsons

    *Withdrawn Drug May Close Window of Hope for Kids*

    Brian Gurwitz has written hundreds of legal briefs in his nine years
    as an Orange County deputy district attorney, most involving cases on
    appeal. The name of the game is research, research, research —
    and
    then persuading someone through the power of your argument.

    But for the last 18 months or so, he's been moonlighting on the
    biggest case he'll ever have — proper treatment for his son,
    Garrett,
    who began displaying autistic-like characteristics when he was 1 1/2.
    However, Gurwitz and his wife, Renee, also a deputy district
    attorney, refuse to describe their son as autistic.

    Therein lies the backdrop for an emerging medical story that, so far,
    has left the Gurwitzes and other parents in varying states of
    frustration, anger and — dare they suggest it? — cautious
    optimism.

    The parents are largely convinced that, in many cases, what has been
    diagnosed as autism in their children may be something else — the
    product of a class of illnesses or disorders related to a
    dysfunctional immune system. The handy name is NIDS, which stands for
    Neuro-Immune Dysfunction Syndrome.

    The distinction is hugely important, they say, because it means the
    difference between doctors and others thinking there's only so much
    they can do (autistic children are thought to have a largely
    untreatable developmental disability), as opposed to being able to
    apply wide-ranging medical treatments with prospects for improvement.

    Marc Share heads the NIDS Research Institute, a coalition of parents
    that formed in Tarzana a few years ago and that now, he says,
    includes 300 families.

    For most of us, the medical issues may be beyond our grasp, but we
    can understand this: parents' frustration that a drug shown to
    produce remarkable results has been taken off the market.

    Kutapressin, an anti-viral drug that has been around since the 1940s
    and is made from pig liver, has various uses. In recent years, Share
    says, a number of children who once would have been thought to be
    autistic have shown "dramatic improvement" under treatment with
    Kutapressin, including such breakthroughs as verbal contact and eye
    contact. About 10 days ago, however, its manufacturer ended months of
    speculation and pulled the plug, saying its supplier was no longer
    providing the drug's key ingredient.

    Share says he hasn't been able to get more definitive answers from
    Schwarz Pharma, a company headquartered in the Milwaukee suburb of
    Mequon. When I inquired, the company affirmed in a fax that it is
    discontinuing production. The statement said, in part:

    " … For some time now, Schwarz Pharma, has been working hard to
    restore the supply of Kutapressin … After months of searching and
    testing other resources, we regret to say that we have been unable to
    find a source that duplicates the product specifications of our
    formula."

    A follow-up phone call asking for elaboration was not returned.

    Because parents need Schwarz Pharma's expertise if a new manufacturer
    is to be found (it has been the only manufacturer of Kutapressin),
    they can't afford to raise the roof, Share suggests. But they aren't
    happy with the company's decision, and are mystified why it can't
    round up more pig liver extract.

    Gurwitz doesn't consider Kutapressin a magic potion all by itself,
    but says it undoubtedly spurred improvement in his son, who started
    taking the drug in April and who turns 3 next month. "We noticed huge
    gains when he went on it," Gurwitz says. "It kills me to think
    whether we'd be able to see the same rate of progress if he was still
    on it."

    The search for a Kutapressin replacement has thrust Gurwitz and other
    parents onto the slow-moving machinery of the American pharmaceutical
    industry and governmental bureaucracy.

    In fact, don't get him started. "There is this perception that these
    kids have this congenital, hard-wired developmental disability with
    no prospect of medical treatment," Gurwitz says. "The truth is, the
    kids who are medically treated can improve to varying degrees. There
    are some kids who are essentially normalized, others who have made
    more subtle progress."

    Like a lawyer relying on logic and precedent, while trying to keep a
    father's emotions out of it, Gurwitz insists the answers are already
    out there. The research is moving in a clear direction, he says.

    "I believe beyond a reasonable doubt that a huge percentage of kids
    who are diagnosed now as autistic are kids suffering from a neuro-
    immune problem, or an immune dysfunction," he says.

    Share, the head of the NIDS Research Institute, sighs and laments the
    passing of time. "In general, the research world moves very, very
    slowly," he says. "With developmental things, if something takes five
    years instead of two, that may be the window of opportunity for
    hundreds of thousands of kids."

    *

    Dana Parsons' column appears Wednesdays, Fridays and Sundays. He can
    be reached at (714) 966-7821
  2. meljackmom

    meljackmom New Member

  3. ANNXYZ

    ANNXYZ New Member

    God bless those children and their parents
  4. cherylsue

    cherylsue Member

  5. Mikie

    Mikie Moderator

    Tried other AV's? I know the Kutapressin is an immune modulator and perhaps that's why it has worked for these kids. Early recognition and treatment is producing results in kids formerly thought to be untreatable. I watched a segment on Autism on a TV news show and it appears that there may be different subsets of Autism. Some kids are not as deeply affected as others and if they receive help early on, they can be treated. Some kids display certain symptoms of Autism but don't seem to have it full blown. Some will display symptoms for a while and then appear to be normal. This illness seems to be as enigmatic as our illnesses.

    Love, Mikie
  6. cherylsue

    cherylsue Member

    There now seems to be a link. In fact some of the CFS research will be under funds given for Autism research. There seems to be an overlap.

    What I really got out of the latest conference is that heavy metal and pesticide toxicity are factors in our illness and must be treated as well as getting the microbes.

    Mercury has been linked to autism. Possibly to our illness as well.

    CherySue