Hi Colleen,

I hope you all are doing well, and I am glad that your trip the the NIH was
helpful! Did you
get the box of stuff I sent awhile ago?

Sorry I have not been as in touch, but have been busy, but have ben thinking of
you.

We go back to the NIH the last week of February. I am not sure who else will be
there yet!

Karen

--- In nomidsyndrome@yahoogroups.com, "colleen.paduani" <colleenpaduani@...>
wrote:
>
> Hello Tara,
>
> Welcome to the group, you'll find a lot of much needed support here.
> I'm pretty new myself as our daughter Quinn was diagnosed with NOMID
> the week of her 1st birthday back in July. Many of your daughters
> symptoms sound familiar to me and I'm sure you'll hear from other
> members in the group with nore specifics, although we all share
> similar stories they are also equally unique in detail. How old is
> your little girl? Did her rheumatologist tell you that you can test
> negative for the gene but still be diagnosed clinically? This was
> the case with my Quinn. She began daily Anakinra injections at the
> time of her diagnosis and the results have been phenominal. Her dose
> has been adjusted a couple of times since and will continue to as
> she grows and in the case of any flare-ups. We took our first trip
> to the NIH earlier this month and it was an incredible experience.
> You will have the opportunity to meet with professionals who are
> knowledgable about the syndrome. I wish you luck in your journey
> ahead, once you find the answer you're looking for, you will have a
> new plan and will feel more in control of this difficult situation.
> Best wishes to you and your family in 2009, same to all the rest of
> you!
>
> Colleen and Quinn xo
>
> --- In nomidsyndrome@yahoogroups.com, "charmingdelightfulandlovely"
> <hardimac@> wrote:
> >
> > Hello,
> > We just found you through the NOMID website. We are newly
> researching NOMID and
> > honestly some of it sounds a lot like what our little girl has
> been going through.
> > some clearly is "atypical" as we have been told her case would be.
> We are hoping you
> > might have some insight whether her story sounds like yours/ your
> children's, and any
> > wisdom and advice you might have for us regarding our daughter's
> care.
> > J was healthy at delivery, jaundiced but came home 2 days later,
> our 3rd child (now has 3
> > brothers). She had a asthma/ reflux symptoms like her brothers and
> a few unexplained
> > fevers and hives over her 1st 2 years of life.
> > Last March (she was 2) she started with high fever (104-105) over
> 5 days, with huge
> > lymph node swelling- this happened again in April and June.
> > May, She had just a 1day fever.
> > Her July fever was accompanied by headache and lymph node swelling
> to the point where
> > she had a surgical lymph node removal/ biopsy as they were
> concerned she had
> > lymphoma (biopsy was ok). August she had a 1-day fever at the
> same time her brothers
> > were sick. September and October fevers were about 3 days, with
> bad headache,
> > particularly at night, with knee pain as well.
> > Her November episode was just 2 weeks after the prior fever, and
> this was preceded by her
> > morning announcement that her knees hurt her, fever started later
> in the day.
> > Through November into December her headaches did not go away when
> the fever left her.
> > November brain MRI fine except pineal cyst. December neurologist
> appt- ordered LP with
> > next fever: LP showed increased intracranial pressure (30)-
> admitted to the hospital for 5
> > days. Rheumatologist did gene DX for NOMID on 12/22, we are
> waiting to hear.
> > If that is negative, he will order gene DX for hyper IgG but
> feels that is very unlikely. If
> > they are both negative, he said we will "road trip" to the NIH.
> > She is still getting headaches, may start Diamox by the end of
> this week.
> > Her rheumatologist described the daily injections for NOMID
> as "one of the miracles of
> > modern rheumatology" in its dramatic improvements in the lives of
> the kids who are
> > treated; has this been your experience? He really did not give us
> a lot more information
> > than that, just to wait to hear back about the results, and call
> him with the next fever. We
> > are also to page the neurologist with any worsening headache. We
> are trying to gather
> > information and prepare ourselves for what may be next without
> getting too far ahead of
> > ourselves. Any thoughts or ideas would be most welcome and
> appreciated. Thank you very
> > much for reading, and our best to you and your families.
> > Tara
> >
>