Dr. H

[Guest guest]

Hi Debbi,

Its our opinion that does indeed have RSS (larger than body size

head, curved fifth finger, hypospadias, a small amount of asymmetry most

apparent with the internal organs,and the general RSS look.)

My concerns are that I'm not doing my best to get him the best care

available. We have been dealing with the immediate problems for so long that I'm

loosing sight of the long range goals,such as future growth hormones and things

that will help in the future.

We still have( hopefully only) one more surgery to go, probably in Feb., but

I want to be able to jump in feet first with the long term medical issues when

is over the next surgery.

We are using T.C. Tompsons Medical Center in Chattanooga TN and the

Geneticist that Diagnosed is Dr. s. We haven't seen her in

around two years. I guess it is poor follow through on my part, but we have had

bigger fish to fry as far as Aprons health goes. Also I didn't know about a lot

of the issues that other families are facing until I joined the onelist support

group. We are one of the families that have never seen another RSS person, and

we rely on the group to help keep us informed as to what the medical trends are

for RSS treatment.

I want to think the group for the news and views on all the different

aspects of RSS and how to deal with the day to day problems that everyone at one

point or another can identify with.

Danna Mom to 3, Carol 12, and 9.