My name is Panravee. My son, Ricky, 9 months old, was diagnosed with
DRS on Friday. I was so ignorant I had no idea what to think of it.
My husband did some research on line and we were stunned to read that
DRS is occasionally associated with some other conditions such
as "radial ray anomalies" and "Okihiro syndrome", with symptoms such
as deafnees, hearing loss, cardiac, renal, and vertebral anomalies.
We were so scared and shocked. Luckily, I stumbled on the duanes-kids
group and was directed to this group. I've read a few of the recent
messages and realized that it seems most people are affected only by
DRS and not those other nasty things. I hope and pray my son's DRS
is the same.
I'm so glad all of you have formed this group. We were so broken-
hearted to think that our happy, perfect little baby will be affected
by a condition that could potentially affect his reading/learning
ability and the ability to play sport, not to mention his appearance.
The messages I read in this group reassured me and made me feel a
little more hopeful.
We're now looking for doctors experienced with DRS in Washington, DC
area (northern Virginia and Maryland included). We would also
consider the East Coast area, although, when we get right down to it,
we'll go anywhere for our son.
Ricky's DRS is Type 1 with his left eye turning in toward the nose,
but not usually very obvious except when you look at some of his
pictures. In the last few weeks, he has been scratching his left ear,
causing a little bleeding, and I'm feeling concerned about that,
given that DRS may be associated with ear/hearing problem. We'd like
to get him fully checked out.
Any comments or suggestions from other members would be immensely