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Dear Kathe,
My son Zach along with Alice, the Leifflers daughter are the oldest on the protocol at the NIH. The good news is the drug has already been approved for adults with arthritis, but they may never approve for NOMID patients, since the disease is so rare and so few are affected by it. The doctors at the NIH said we would not have a problem getting it in the future. The good news is at least for my son, and I know other patients on this protocol that this drug, Anakinra and IL1 Inhibitor has stopped the progression of his disease. The way it was explained to me, is when they discovered the misplaced gene causing the auto-immune response they were able to see what part of the immune system was over-reacting. They discovered the IL1 is over-reacting and Anakinra inhibits the receptors from receiving the wrong information; therefore stopping the auto-immune response. For the first time in his entire life his blood counts are within normal
range. We also have been able to reduce his steroid dose significantly and in the past, even with combinations of drugs never were able to reduce his steroid dose, which was causing other problems. Long term, I have no idea how this drug will affect my son, but for 20 years he has been fighting this disease and this is the first break he has had. Quality of life really does matter. I know, being diagnosed early, can help prevent the progression of this disease. The severity of this disease varies with each child. My son in the past 2 years, was losing his vision and hearing at a pretty rapid rate. The good news is, since he has started the Anakinra things have remained stable, with no progression. Thank God! Everyone at the NIH is wonderful and will work well with your doctors. Good luck and let me know if there is anything I can do.
Take Care,
Jan, from St. Louis
trakylian <kathebarch@...> wrote:
trakylian <kathebarch@...> wrote:
Hello,
I am new to this group. We are waiting on blood test results from
NIH for our 8 month old son. We believe he will be diagnosed with
NOMID/CINCA. He has had symptoms since he was 2 weeks old.
I don't even know what questions to really ask. Is there any advice
from any of you.
Thank you,
Kathe
--- In nomidsyndrome@yahoogroups.com, "doreliarivera"
<doreliarivera@y...> wrote:
>
> Did you receive a message I poste yesterday?
>
> Thanks.
>
> Dori
> --- In nomidsyndrome@yahoogroups.com, Jan DaPrato <jand71054@y...>
> wrote:
> > Hello again,
> > I thought if anyone needed a pick me up, this would do it.
> It's beautiful. Jan and Zach
> >
> > Note: forwarded message attached.
> >
> >
> >
> > Note: forwarded message attached.
> >
> >
> >
> >
> >
> > -----Original Message-----
> > From: Loretta McDonogh [mailto:lorettamcd@c...]
> > Sent: Saturday, February 12, 2005 2:46 PM
> > To: Caymoehle@a...; Dolores McDonough; Gerry Mahoney; Jeanne
> Bortosky;
> > Jim McDonough; Kathy McDonough; Kristen Aldenderfer; Martha
> Aldenderfer;
> > ballycon76@e...; Mary Courtney; Pat Kubiak; Rosie Lupcho; Shirley
M
> > Otto; Sister Barbara (Sister Isabel); Thomas J. Sullivan; Hunt,
> Teresa
> > Subject: FW: Interview With God
> >
> >
> >
> >
> >
> > -----Original Message-----
> > From: Terry Reilly [mailto:reilly65@v...]
> > Sent: Saturday, February 12, 2005 10:21 AM
> > To: Terry Anne; Cynthia; Kathy Wilkens; Bill & Gracie Dean; Bill
&
> Melba;
> > Allen; Prax & Nancy Rivera; Pat & Wanda Reilly; Loretta
McDonough;
> Mary &
> > Gus Stapf; Chris (for Mom)
> > Subject: FW: Interview With God
> >
> >
> >
> >
> >
> > _____
> >
> > From: FRust30761@a... [mailto:FRust30761@a...]
> > Sent: Friday, February 11, 2005 3:32 PM
> > To: wtb10@c...; mgcc@g...; hihopes@f...;
> > kayserrs@m...; reilly65@v...; no1lildoc@j...
> > Subject: Interview With God
> >
> >
> >
> > Being happy doesn't mean everything is perfect. It means you've
> decided to
> > see beyond the imperfections.
> >
> >
> >
> >
> >
> > http://www.theinterviewwithgod.com/popup-frame.html
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