Hello All,
We are home. It has been a long and exhausting week. We got home
Sat., were home for about 18 hours and Kieran was admitted to the
hospital here for a spinal headache. Today is Tuesday and we are
finally home. Hope for good this time. He is doing good now.
Sunday was terrible. I don't think I had seen him reach his limit
before. As adults we are allowed to say no to treatment. As
children, you are forced by your parents. He was a mess!!! He
yelled and screamed at us like I had never heard. I was a mess
too. I am sooooooo happy to be done. At this point, the anakinra
is the easiest part of his life. He started taking the shot on
Thursday afternoon and woke up Friday hive free. He hasn't had them
since. His skin color is different to me because the redness of the
hives isn't there. Weird. He doesn't like the shots but LOVES that
he doesn't have hives. He says his "skin doesn't itch or hurt
anymore." He chooses the shot over the daily meds he had been
taking. He still doesn't like the actual injection but he picks out
his own site, cleans it and then holds the guaze over it when we are
done. He is still crying everytime and we have to hold him down a
little at the last minute. He is scared to try his stomach even
though we told him a lot of the kids like the stomach injections
best. The fantastic news we received is that Kieran's disease is so
mild he didn't meet criteria for the protocol. They were able to
place him in another though so he can get the anakinra. His
pressure in his spinal column wasn't elevated. He had only 4 WBC's
and would have to have had 7 to remain in the study. He has no
papilledema (sp?). Kieran has confused them because his mutation is
on the same place as another patient who is much more severe. They
want to classify him as Muckle Wells, except his mutation is on the
NOMID end of the gene.

I would like to continue on but I need to run to feed the kids. I
will send more info as I think of it and have more time. Hope all
is well. Please call me or email if any of you have questions.

Take Care,
Michele