Tyler Terry

[Guest guest]

Hello Everyone,

Most of you don't know me since its been awhile since I have been on

the group. But I am back and anxious to get back in touch with

everyone. I have four year old identical twin boys one with

infantile scoliosis. Tylers story is on the website. He has been on

and off in casts and braces for the last three years. He has also

had periods of time with no support on his back (doctors didn't

think he needed)He has had great results when put in the casts but I

feel always taken out prematurely. He has went up and down and each

time put back in a cast. His worst curve was in the 40's with a RVAD

of 49. Just six months ago Tyler was at a 4 to 6 degree curve with

RVAD of around 0 to 3. The doctors said they did not even consider

this scoliosis. So we were pretty excited. We at that time were

given a brace to wear part time and to lessen the hours little by

little. We were told he didnt need to get a brace at all it was up

to us. We did good for a few months but really thought he was fine

so he has been without any support for around four months now. We

just returned from SLC last week and he has around a 20 degree curve

with a RVAD in the 20's or 30's. For some reason the doctor did not

measure the RVAD and just estimated this time. His ribs do not look

good at all. I watch his back like a hawk and for so many months his

back was stable. The last month it seems to be changing everyday.

Just a few weeks ago I could only see his rib hump if he turned

certain ways or bent over. Now it is clearly visable with him just

standing straight. We go back in two weeks and get a brace. At that

time I am going to request the doctor measure the RVAD. I asked the

doctor for a cast and at this time he wants to go with the brace. Of

course I am scared. He obviously needed to stay in support for a

lot longer. Now that he is 4 1/2 I am scared he will not correct as

easy as he has in the past. When we go back I am going to talk to

the doctor once again about another cast but I thing he is pretty

set on trying a brace first. Tyler's curve has stayed stable for

long periods of time but when he does start curving again its

amazing how fast he curves. It's very frustrating. Thanks for

listening to me vent. Hope to get to know everyone and to reconnnect

with you guys that I havent spoken to in so long.

Take care Tawney