Dear Sherri,

Thanks for the tip on that e-mail, I thought it may be
spam. Seth and I are flying on Saturday, March 27th,
and will stay in the Children's Inn that night, then
adimit into the hospitqal on the 28th. We will be at
the Inn by 8:30 pm on the 27th, so if you're not too
tired we will have to connect at the Inn too!

I am sorry that Miranda is in a lot of pain, Seth was
having a lot of trouble before we started the shots,
and not wanting to walk (and using the stroller to get
everywhere) and had a lot of flare ups, which made the
idea of going through the shots, and all the tests an
easy choice. It is amazing how quickly and well the
resonse is to the medicine! By the time we flew home,
5 days after the start of the medicine, he was walking
through the airport!

Seth got sick right after we returned from the NIh in
February, after the second visit. His older brother
came down ill within hours of our return, and of
course, Seth got it! Seth was on antibiotics for 3
weeks for a horribly resistant sinus infection, and
then started to have symptoms of flare ups (but no
rash) with fatigue, pain, and head and back aches,
etc. I was not sure if it was all inflammation, or
something very serious, since he was so fatigued, and
had been sick so long, then got better, then started
the flares. His labs proved it was inflammation, with
ESR of 87 and C-reactive protein of 9, so he is now on
the 1.5 mg/kg dose, and is finally doing better after
a week on the higher dose.

With no rash to correlate with the flare behavior, and
post illness, it was a scary time. i do not know what
other people have experienced, but I thought others
may want to know.

We are looking forward to meeting you and your family,
and hope this medication helps her as much as all the
others. The daily shots can be a battle, but it is
worth it. Seth did well for the first month, then he
really has fought it the second month, but of course
he was sick, and felt awful, so it was harder to
convince him that it was to help him feel better. He
often says in his nightly prayers that, "I don't like
the shots but I like feeling better." It is good to
know that he is starting to get it, since I really
felt badly having to be the giver of the shots.

Best wishes to all, and thanks for the support and
friendship!

Karen Durrant

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