Dear jim and Sherr and Everyone,

I am sorry to hear that Miranda has been having problems, I was
so hoping to hear good news! I also have to apologize that I
have not kept in better touch these past few months. I think that
Michelle Griffin tried to call me in July, while we were on vacation,
and I have tried to call back many times and have left messages,
but we have not connected yet. Hopefully that will happen soon.

Seth has started kindergarten, and had a good summer and did
well on our vacation. Then, on September 11th, he had a tiny bit
of redness in his right eye, which we treated with antibiotic
drops, and it got worse (he also had a sore under the lid too, but
he has done this before). The eye got worse, so we switched
medication on the 3rd day, then the next day he would not wake
up on his own, and slept 2 hours later, and was very groggy, and
had a fever with no known cause, and the eye was really red, so
we spent a day going from clinic to eye clinic, lab, etc. he had
developed an iritis, and went on steroid drops.

We were not sure why he had the fever and lethargy, and they
did cultures of the blood, etc. (negative) but the next day he had a
bit of the sniffles, and the fever lasted 4 days. The eye got worse,
so we went back and he had developed something called plastic
uveitis, and the iritis, and some gunk sticking the iris to the lens.
Very scary, and I guess this can happen a lot in NOMID kids, and
we had hoped that since he was on Anakinra, and had only mild
papilledema, and never had this, we would avoid it. He went
onto hourly steroid drops, and constant eye dilation.

Seth aslo developed a bad headache and pain over the right eye,
so they did a CT and found chronic sinusitis on the right side.
He is on antibiotics, and was on hourly eye medications (in the
day) until yesterday, and is now on every two hour doses,
because he is miraculously healing from the eye stuff. He now
has a fever again, a week since the last one, and draining a lot
for his nose, and a cough, but is still on antibiotics, and we will
see how he is over the weekend, in case things need to change.
We are so thankful that he has responded to the eye
medications, since over 55% of kids with NOMID do not. Very
grim.

He is bummed because he has missed almost 2 weeks of
school, and his birthday was yesterday! He did get to go to his
class yesterday, but I had to stay to do drops, etc. and keep him
inside and out of the sun since his eyes are so dilated. He loved
being there, and on his birthday to bring treats, but had to miss
today, since he developed a fever again, and is wiped out, and
draining a lot from his sinuses. He did have a good birthday at
home, and at school, and I hope it did not wear him out, causing
this fever thing. You have to live a little though!

He is a good sport with it all, and is doing well, in general with
the Anakinra, and until this latest stuff, had the best labs ever in
his entire life! He has grown a bit, and gained a few pounds over
the past few months too, which is wonderful.

I hope every one else is doing well, and I really will be praying for
Miranda too. I was hoping to hear she was really responding to
the medication. Also, Congratulations to the Nordhoof family
and their cute new baby.

We miss Janet too, even though we do not return until Jan 2nd.
Ana has been very helpful, and of course doctor Goldbach-
Mansky and Dr. Rubin too these past few weeks. Scott seems
nice over the phone, and dedicated to the project. He told me
that the next year's protocol will have 2 visits, at 18 months and
24 months, and will be outpatient visits! Also, no monthly Dr.
visits and labs! Anakinra will also continue to be provided as
well, which is great news for all. We have not minded the visits,
but as we all know they are hectic, and intense, and the
frequency at first made life get behind back home.

I am glad that I am able to be home with the family now, since I
would be going crazy trying to get people to cover shifts of work,
etc. with Seth's latest illness. I had planned to start back to
something once everyone was settled in school, (seth is only 1/2
day, so it is a weird schedule) but so far, I have not had the
chance. I feel that I am still doing plenty of nurse duties at home!

Best wishes and happy fall!

Karen Durrant