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, "charmingdelightful andlovely"
<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
>