hi folks,

here is janet jones address where she told me that i should send the medical reports to:

Janet Jones
10 Center Drive MSC1828
Building 10 Room 9S-205
Bethesda, MD  20892-1828

she said that sending the reports to her this wasy was more direct and therefore a faster method.

take care,
belinda


-----Original Message-----
From: Okazaki, Belinda
To: nomidsyndrome@yahoogroups.com
Sent: 2/14/03 11:07 AM
Subject: RE: [nomidsyndrome] (unknown)

hi karen,

welcome to the nomid family...
sorry to hear about seth's trials (and yours too, of course)

i wanted to let you know that we have plans to visit the NIH the
following week after your visit.  we have plans to arrive a little
earlier in hopes of maybe meeting you and your family.  let me know what
your thoughts are on this matter.  if you prefer not to meet during this
hectic time, we can try again at another time.  i believe that we will
be arriving in dulles on thursday.

have a happy valentine's day!
hang in there!
belinda

-----Original Message-----
From: sfokaren2003 <nathankaren@...>
[mailto:nathankaren@...]
Sent: Sunday, February 09, 2003 9:26 PM
To: nomidsyndrome@yahoogroups.com
Subject: [nomidsyndrome] (unknown)


Dear Everyone,

Thanks agin for the information and help you all have given me the past
few weeks.  We will be going to see the doctorss at NIH the week of
April 6-12th, and we will be at the Children's Inn.  I am hoping and
praying that things in the world will be ok at that time for travelling
near the U.S. Capitol, considering the Iraq crisis.  We are hopeful
that it will be a good trip, and that the information we get from the
NIH will be worth it.  I am wondering if there are any breaks in the
day, or if it is non-stop appointments all week?  If anyone could share
what their week's schedule is like, it would be very helpful.

We were so thankful that we were able to get extremely cheap tickets to
Baltimore Washington Airport from San Jose, CA on Southwest for around
$160.00 total round trip, per person!  We live in San Francisco, so we
will have to drive over an hour to the airport, but for the savings it
will be worth it!  My husband and Seth's brother, Ethan are coming as
well, and hope to do some sightseeing while we are there.  After the
NIH, we will be visiting with my husband's mother and step-father down
near Richmond, so we are trying to make it a fun trip.  Th Children's
Inn looks nice, and I think everyone will have fun there.  It may be
hard to get Seth away from there to the appointments (especially once
he has cought on to what he has to do each day)! 

So many people do not understand why we are going out to the NIH, and
think that the researchers are going to treat him like a lab rat or
something.  It is so hard to explain this syndrome to other people, and
the potential for better treatment and preventative care that seeing
these specialists can bring to our children. I am so glad that there is
this egroup, and that there is a place where people do understand.  Our
son is not suffering from as many affects of the syndrome compared to
many, but my heart goes out to you all, and to your darling children.

We have, in general, tried not to talk much about Seth's health issues
with others, unless they ask, since we don't want him to feel labelled,
or have people treat him differently.  Unfortunately, people still do,
and always have things to say that are often condesending (although
they think that they are being helpful).  I am now in many ways glad
that I can say what he has, that he has a genetic mutation that causes
the rash and symptoms, so I don't have to hear the usual commentary
about things like:  Do you have toxic mold in your apt? (No, we checked
into that), or maybe if you moved to another place or city, will it get
better, or will he grow out of it, is is an allergy, have you tried
elimination diets, why has this happened to him, and your family
etc.....  I am sure you all have heard them all too, and have turned
over all the same stones we have before coming up with this syndrome! 
It was frustrating, because no one questions you like that if your
children appear to be "normal".  In fact, I don't think that many
people say anything like thatto parents of children with Down's
syndrome, or a heart defect, or other things that the general poulation
is more familiar with than NOMID.  (Even many doctors do not know about
it!)  Anyways, I am grateful for this group, and the support you all
give, and I have taken the time to read many of the archives, because
it has really helped me a lot.  The website has done a lot for us as
well.

To Michelle Griffin, thanks for e-mailing me and sharing your story and
photos, and it is amazing how much our boys have in common, as far as
this syndrome.  Unfortunately, the boys do not share the same kind of
genetic mutation coding, as we had hoped, but I am sure that as more
children get tested, and the registry grows worldwide, more answers
will come in time.  I will be sending Seth's story and photos soon to
the website, but my husband has been too busy at work to scan the
photos, but he will this week.

Thanks again to everyone, and have a wonderful Valentine's and
Predident's weekend!  We are hoping to do something, but our boys have
had a bad cold, and now just came down ill with a new one, with a bad
cough, so yet again, we will probably be home.  It seems that whenever
we plan something, someone gets sick or something!  Our oldest is just
in Kindergarten, so the germs are shared all around the class. 
Unfortunatly, if he gets sick, Seth always gets it, and he gets it bad.

I am sure you all can relate to this!  Has anyone been tracking the
frequency of illnesses?  We have thought about it, but being that it
seems like at least once or twice a month Seth catches something, it
seems like all the time. 

The strange thing is, if he gets really sick with a virus, his rash
almost disappears, until he gets over the cold.  Has this happened with
any of your children?  Seth always has a rash, so this is notable to
us.  He gets a severe rash if an illness becomes bacterial (we had a
close call with Strep throat last month, when Seth came down with the
symptoms a day after Ethan did and before the strep test came back. 
Seth started to get a huge red rash, but luckily was put on antibiotics
right away, along with my other son, so it did not go fully into
scarlet fever.  it was scary though).

Have a good week!

Karen Durrant



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