Dear Kate and Lisa,

I was thinking that if you could look at the Amazon.com website,
down in the left bottom corner box is an program called "Amazon
Honor System". It is a way for web sites to collect donations, and
it is working for someone else I know with their own website for
their child's special needs. it would be there for anyone that
comes to the NOMID home page.

If we did this, it would help get things going until we can get the
Non-profit stuff, a foundation name and all. Lots to do, and I
have been looking at the Genetic alliance.org website, and there
is so much there to help us. Too bad I had not known sooner,
since they are havinga big conference in Bethesda the end of
this month!

As for Fynley, I am very concerned that you are having to wait
until September for and MRI, considering all the pain, and his
curling hands. This can be a sign of neurological affect from
pressure in the brain, and increase pressure and inflammation
in the brain could also be the reason he is so miserable! Seth
used to have terrible neck and head pain, and would not let us
touch his neck or spine without screaming when he was falring
up. he had increased pressures, that are now ok on the
Anakinra. I am also sad to hear that Fynley is not eating much,
that must be scary. Please get him some help for that too, and
see what can be done. Will he drink? Seth would get so thirsty
with his flares, and would drink cups and cups of soy milk (he
has a cows milk allergy). He would not want to eat, but was so
thirsty for milk. He still does this when he is having symptoms.

As far as side effects, those studies were done on elderly
rheumatoid arthritis people, and I do not think that you can fairly
compare the results to these kids, or this syndrome.

All things have risk, but my son had more life threatening things,
and even a cancer scare before the Anakinra, and has never had
trouble with increased infections due to the medication. He is
always a germ magnet, and used to have very high White blood
cell counts, along with all the other stuff that was sky high. He
needs to get his tonsils and adenoids out, but they have known
this since prior to the Anakinra, but he needed to be more stable
before we did that surgery, so that is why he is finally getting it
nect month. The Anakinra has brought ihis white blod cells into a
normal to only slightly elevated range. He has never become
immunocomprimised by the drug. Perhaps in the population of
rheumatoid arthitis people for the studies, where they do not
have the same inflammatory responses, or high white counts to
the degree of the NOMID kids, that there were more affects.

I have felt that compared to steroids and Morphine, and the long
term detrimental affects those can cause, I would take my
chances with the Anakinra! I am not sure that they have told you
how the steroids affect kids in the long term, but it is not good.
Also, I think many of the kids that have been on them a long time
have had decreases in bone density, and changes in the tissues
surrounding the lower end of the spinal cord, near the sacrum,
that over time, has caused a lot of damage. Jan (Zachary's
mom) could explain all this better than I can.

I agree with Kate to get the GOS to pin down a date with the Dr.
WOo, and also you should talk with them on the phoe to see if
they will make a protocol exception for your son. If it is uncertain,
or if there is a long delay until they can see him, run to the NIH as
soon as you can! Get a passport now if possible, so you will be
ready. You should have the right to get a clear idea of what they
will offer you at the GOS so you can compare it to the NIH. I
understand that flying to the US is inconvenient and costly, but
after the first trip, they can assisat you with the costs. They could
also get you some help with special airline programs for these
things, just ask the NIH. I think they just need to set you up with
a social worker to get it going.

I travel for about 8 hours to get to the NIH from San Francisco,
but it is worth all the hassle! You should not have to be having to
beg and ask for the doctors to do labs regularly, they should get
a plan for you! I am shocked to hear how you are being treated,
and the delays for an MRI are very concerning. Have they seen
him lately in person, and sen how he is feeling and his hands
curling in?

Please know that I too am not trying to coerce you into a trip to
the NIH, but know how great it is, and how many things get done
qwuickly, and the level of care and experise there is for this
syndrome. If only the entire nation's health care was this easy
and good! We have had good doctors at home, but have had a
few in the past that were very unhelpful and lacked knowledge
about this syndrome (even thought they were in rheumatology).

If I had not been actively seeking to find an answer, and kept
searching, and questioning, I fear how long it would have been
before Seth got the proper care, or sent to the NIH. I found out
about the NIH through this Yahoo group, and started to call. I
had to have my pediatrician refer us, since our rheumatologist at
the time, would not return my calls, and was in denial about
Seth's syndrome (even after the Genetic test done privately by
Gene DX came back for NOMID, before being confirmed by the
NIH!).

In the end, Fynley is your son, and you have the right to choose
what is best for your son. Do not let any doctor put their agenda
first, or intimidate you. Also, make them aware how he is
suffering, and that there is a lot of risk in waiting for care. If they
question it, they need to get more aware of this syndrome!

Let us know of your fundraising plans, and where we can assist,
if you decide to go to the NIH.

Best of luck, and thanks for letting us know how things are
going. Kate, you will hear from me again soon !

Karen