Dear Jennifer, Karen and all,

First of all, I am so sad Jennifer that things are not going as hoped
for your bones, and also for Mikko. Also, I am sad that Fynley still
is without diagnosis, and hope that maybe we can meet at the NIH sometime!

I have had little time to write, but need to call you Jennifer ASAP
to talk about NOMID Alliance stuff, the brochure and all that.

To all, thanks for your support and congratulations on our little
baby! He is so sweet, and doing much better now, but we have had some
things to deal with Lucas anf his healthfor the first month, so I
haven't posted much lately.

Seth has had Dexa scans since 2003, and used to be 2.5 standard
deviations below average on the scoring before the Anakinra. He
started the Anakinra January 2004, and was taking supplements of tums
for many years with some improvement on the DEXA acans after a year on
the anakinra. I started to use Caltrate 600 chewables with Seth about
2 years ago, which have added Vit D, and other vitamins( I got the
most fortified chewables they had) plus tums to equal 800 of calcium,
and he then started to lay on bone fast, and now as of July, his bone
density is at normal, so we have gone back to just 400 mg of Tums a
day, and will see if he maintaings things on his next scan when he
returns in a few months (I am not sure when-we need to call Nikki this
week to book a trip and lock in a time)

Seth has never had steroids, since his diagnosis came about a year
before he started the anakinra, and the NIH said to hold off on
steroids if possible until then, so he was lucky, although he suffered
a lot until going on the anakinra!

As for bone density, I have been told that inflammation issues
interfere with the bone density, and there are other factors that can
come into play too, such as weight bearing activity, and genetics, and
steroid use too. I am not sure if the Caltrate shewables made the
difference for Seth, but adding those on into his plan worked, and he
got extra vitamins in that chewable (no dairy-its like a fat tums
chewable tablet) that are supposed to help with bones, like Vit D, Vit
K, Magnesium,Zinc, and the calcium. Maybe those other things helped.

Talk to the NIH and see what they say. They do feel that Seth is
getting lots of Calcium, so we reduced it, but he has not had any
symptoms showning high Calcium like Mikko. Good luck and keep us posted!

Karen Durrant