Dear Jan,

thanks for the information about orthotics, it was helpful. Seth has
some inserts from the NIH, and I need to get some new ones, but the
Podiatrist was very negative to what the people at the NIH gave Seth,
and said he needed something more to correct his problems. However, he
didn't really do anything to help us know what to get, just what brand
would be best, and it was frustrating. I think that I will need to
seek out someone, and pay out of my pocket to get a doctor that seems
to be more appropriate, since this guy was obviously more of a adult
doctor. My oldest son needs new inserts as well, so I really need to
get a good doctor here. Yet another project!

I am sorry to hear that your son's hearing is getting worse. I sure
hope this protocol starts soon, and is a miracle cure! Of course,
hopefully we all can get the medicines through the NIH, since the
bartons have told me that they are having great difficulties with thier
insurance covering medicines, and cares. It is so frustrating to have
to deal with the beuracracy and politics when all you want is to get
the best care for your children.

Is it any better in other countries? I sure hope so! I have to say
that the NIH was impressive, since I did not have to deal with anything
with authorizations, insurance, etc. and everything really happened
fast, and efficiently (and it is a government system!). It has made me
wonder what it is like in countries that have a standardized health
care system. Of course, nothing is perfect, but things could be tons
better here!

Karen