Hi to all and sorry for not writting sooner but our lovely computer is on
the blink.We arrived in Washington on the 13th march to the wonderful noise
of demonstrations, but with knowing that I would meet up with my old friends
and goddaughter that I knew in Germany.
We checked into the NIH on the Sunday to save time on the Monday for Alex's
meds. Little did I know that a cough he had had since the week before was
about to turn into a chest infection ?pneumonia. Well we got a room to
ourselfs out of it if nothing else. It's amazed me that the nurses couldn't
understand that a child on 1060mg steroids might not have a temperature even
though he had a chest infection.

Monday was spent having an MRI of the head with and without contrast Alex's
was soo sleepy that he slept through the whole thing waking up long enough
to have the IV inserted. results showed he had bilateral ear infections and
sinus infections which were then treated with three weeks on antibiotics.

He amazed his nurse Debbie by insisting that once his IV's were over that he
wanted the hep-lock removed and that he would deal with having a needle
every day. She even came up with a bag of popcorn to have during his med
times. Which is what his home nurse Vanessa does.
Tuesday was the busiest day in that Alex didn't get lunch till 5pm. and the
only appointment that upset him was the eye. They were not very patient and
wouldn't let Alex keep control of the situation. and one of the only times
he wanted to go home.
Most of the Doctors were impressed with his cooperation and told him that
most adult patients didn't as good which made his day.
The staff are very willing to help you and alot is done to help your child
especially those in rehab and OT. I am hoping we get to see some of them at
our own conference next year.
Alex went on to have a spinal tap. This was done with no sedation and Alex
performed very well considering that he has scar tissue from previous ones.
His pressures were still elevated and it just amazes me how up-beat he
still is. His blood and urine tests also showed that his disease is still
very much present. We will be talking to Dr Warren at the end of May to see
if he should change some of his medications.

Now on to what I talked to Dr Goldbach- Mansky about. I explained to her
about our concerns over the new gene and how some of you are now feeling
lost when you are told that your child doesn't have the gene or that it is a
different one. She told me to tell you to treat the symptoms of your childs
disease and that just because it isn't exactly the known mutation does not
mean that your child doesn't have NOMID. They are now looking further down
the Il-1 pathway at different protiens.
Also I must tell you that the NIH will soon be conducting a clinical trial
and therefore ask that for you to be included in that trial that you not go
on any new drug regime in the next 8-12 weeks unless your physician really
has strong reasons to do so.I will give you more information on this once I
get information from the NIH



Regards to you all Katexxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx