Dear Sherri,

Guess what Sherri? Seth will be at the NIH from March 28- April
8th! He will be there for the big visit, with the flare test (withdrawl
of the medicine). I am not exactly looking forward to that part , or
the LP, etc. but it is all worth it. We will have to get together there.
It will be so nice to meet in person! I warn you, that first visit is
very busy and intense, but the second is much better (and you
get to stay at the Children's Inn the second visit).

It has been a lot of fun meeting other NOMID families, and Hello
to you all that we have met! I am not sure if we are supposed to
mention names, since the whole HIPPA and patient privacy stuff
due to the research. Does anyone know about this? It has been
an amazing and inspiring experience to meet you all, and I am
truly in awe with what wonderful and talented children we have
met that have NOMID. Many have suffered more than Seth, but it
is amazing how there are such similarities in the stories of our
children, and little details that we have discovered, even from the
infancy period.

I think the weirdedst thing after talking with other families, is
many babies have had excessive, toxic looking bowel
movements, and used over 140 diapers or more a week due to
this. Seth, and a few others were this way, but no one had a
diagnosis back then, and nothing has been written in the
literature on this. Everyone told us, "it is because they babies
are breastfed" but this is way beyond normal breast fed baby
excrement! Perhaps this information, although a disgusting
topic, will be of use to someone for diagnosis of these children.

I am also amazed how many have had pericardial effusions,
including the mother and daughter that have written in. If that
had been in the literature, I think Seth would have been
diagnosed closer to 13 months, when he had a pericardial
effusion. There is so much to learn, and families getting
together really brings out these details.

I wish eveyone the best of luck, and thanks to all we have visited
with through the NIH! Considering the rarity of the syndrome, the
fact that we have met 5 other families with NOMID since last April
is an impressive number!

We have been so impressed with this medicine. Seth's labs
were in the NORMAL range at the second visit, which has never
happenned, including the C-reactive protein, and ESR! His
anemia was improved, which is a first ever as well. He does not
have to take as much iron now, shich has been a nice change.
He was getting a lot of stomach irritation and problems with high
dose of iron, which were still not helping the anemia, until the
Anakinra started. Seth has also had a reduction in his optic disc
edema, and improved hearing tests, due to the reduction in
pressure and inflammation in his ears. Of course, the rash was
gone ther first day after the medicine started, but the best part is
the reduced pain, and increased strength and stamina. He was
using the stroller to get around everywhere before the Anakinra,
since he was in pain and weak, but withing a few days of the
medicine, he was walking more than riding the stroller, and
much more active!

I am so thankful that this medicine is available for these patients
with NOMID, and hope all the people with this syndrome in the
world can get it. Does anyone know what the cost is per dose? I
wonder what will be the next phase with this study, once this year
is up with the NIH. I hear that they may have other studies, and
we will probably return to the NIH over many years for various
things, but I am wondering about this. I think that my insuraince
would cover it, if it is deemed medically necessary (I think that is
already proven) but you know how insurance is! Any insight is
welcomed!

Best wishes to all,

Karen Durrant