Dear friends,

We are back home from our trip to the NIH, and visiting relatives. It
was worth thr trip, and very helpful for Seth. Everyone was so nice,
and really cared about us all, and Seth tolerated the busy schedule and
tests well. The Children's Inn was wonderful, and the kids really got
spoiled with all the prizes that they won at Bingo night, plus the
daily mailbox surprises! This all made it a special trip, and glossed
over the few difficult procedures, such as the lab draw, and the spinal
tap.

One of the highlights was when the Okazaki's came into town, and made a
special trip to see us at the Children's Inn, the night before we
checked out. They came a few days early, and we truly appreciated
their efforts to see us. It was so nice to meet in person, and share
our experiences, and for our children to see another child with NOMID
(I don't now how much they realized this though, but they had fun!) I
sure hope that everything went well for them at the NIH the following
week.

We did find out that Seth has a very slight conductive hearing loss,
and slightly affected sensory hearing too, but they are not sure if it
is from inflammation, and can be reversed. He also has elevated
pressure on his spinal tap, and slightly elevated optic disc edema, but
not to the point of calling it papilledema. He also has loose
ligaments in his body, especially at his knees. His CT scan was normal
though, which is good. They think all this is due to the inflammation
going on in his system from the NOMID. He does not have any bony
changes on the Xrays, which is good, although he has joint aches, and
sometimes limps on his right side. We are stil waiting for a few labs
to come back, which will determine if we need to change his medications
or not, prior to the new medication protocol.

They want to put Seth in the medication protocol, but they plan to
start in 6-8 weeks with the children that are a little older, and more
affected first. They hope that we will be able to keep him on only the
Naprosyn and Zyrtec, and not start heavier medicines, until we can
start the new medicine. It sounds like it will be a great thing for
our children, and I know we all cannot wait for the testing to start.
The medication is a daily subcutaneous injection, which is not fun, but
compared to what most of these children are having to go through, that
is minor.

It was so nice to finally meet doctors and other specialists that
really know a lot about NOMID, and they all have seen the other cases
as well. I think that we were the 14th family to come to the NIH with
a NOMID child. I do not know how many are from this egroup. Even
though the schedule of appointments was busy, it was nice that they are
all in one building, and you get so much done in such a short time. We
also came home with lab reports and consultation reports in hand, which
doesn't happen much in the outside world!

We did get to take the Metro one evening to the ZOO (it closes at 8 pm
after daylight savings time begins, and the buildings close at 6 pm),
and the Museum of Natural History another afternoon. We got free
tickets for the DC tourmobile from the child life department on the
14th floor of the NIH clinic Building 10 (where all the appointments
are). We did that on Saturday, after we checked out of the Children's
INN (they will hold your bags in a locked room for the day when you
checkout) and the tour was great.

The tourmobile takes you everywhere, even Arlington Cemetery (we didn't
go on that part of the tour) and you can get on and off for free all
day, at all the sights. It is great with small kids, or if they cannot
walk far (Seth was in pain that day, so we used the stroller a lot),
and we saw so much more than if we had to take the Metro alone. The
tickets are normally $18 per adult, $8 per child, and the NIH gave them
out for free! It was really worth asking for the tickets.

The Children's Inn shuttle to the grocery store runs at 6;30 pm on
Tuesday and Thursday, and earlier on Saturday. If you arrive on a
Sunday, bring some stuff, but they do have some things in their pantry
for people to use if needed. We arrived to a meal prepared by
volunteers, which was nice, but we had brough our own, since Seth has
some fod allergies. The NIH will order 3 meals a day for the child that
is a patient, so that was helpful, but they were hit and miss with
Seth's food alergies (They once sent up a cheeseburger (he cannot have
dairy) instead of a plain hamburger, then the replacement was on an egg
bun (he is allergic to eggs). The other days were better, but after
that foul up, they stopped sending up menus for him to order on, and we
stopped trusting it anyways!

Everything was very clean at the Children's Inn, and the clinics. It
was so nice to be able to let the children play in the playroom, and
have fun with al the other children. The NIH is really trying hard to
not have people come to the clinic sick, and we saw signs everywhere.
Since we are from San Francisco, we were questioned a lot about
exposure risk (for SARS) at the NIH and the clinic, which was good to
see. I felt very safe there and we stayed well throughout our stay
which was a real blessing! I felt so bad to hear how sick ALex Barton
was on his journey. I hope he is doing better.

After the NIH, we went to Southern Virginia for a few days, and the
highlight was Busch Gardens Williamsburg. It is really a wonderful
amusement park, themed on towns in Europe. There we so many little
kids rides, which was a real treat for Seth, since he is still little.
Our older son could go on more rides, but has a weak stomach for them!

We took the Amtrak trin from Richmond to BWI (Baltimore Washington
Airport) which was very efficient, however, our oldest son started to
get what we thought was motion sickness in the car to the train, but
then proceeded to vomit the whole way on the train, to the airport. He
seemed to be better at the airport, and even ate, so we decided to
catch our plane home, but he developed diarrhea on that leg of the
trip, and vomited right after he got off the plane! He is more prone
to this, and used to be on reflux medicnes until 3 years of age, and
also had delayed gastric emptying, so this was very ard on him. We did
make it home, and that was a good thing! He is finally feeling better,
and we have mostly avoided getting the illness. Thankfully, Seth
doesn't have stomach problems like Ethan, and was spared!

The doctors ath the NIH are having us give even more supplemental Iron,
and Calcium to Seth, due to the affects of the NOMID?inflammatory
pathway in his system affecting absorbtion of these substances. I did
not hear about the results of the bone density study, but we know that
they are concerened about these children, and want to up the odds that
they can get enough Calcium to prevent osteoporosis in their later
years. Has anyone else been told to do this, and have you found better
iron supplements beside the liquid iron, and Tums, in addition to a
multivitamin with Iron? Seth doesn't do too well with higher amounts
of the iron, so we are slowly trying to increase his dose.

Best of luck to you all, and I hope to hear soon about the first
children in the medication protocol that will start this summer!
Thanks to all of you for helping us with questions about the NIH, and
NOMID, and everything.

Karen Durrant