Pankratz- wondering if your back from SLC?

[Guest guest]

Hello!

My name is , and I'm responding to Shellie's request of me to

contact you (sorry it took so long Shellie!, we were gone to SLC

ourselves at the time of your E, and I just now got through all my

back emails) Shellie thought of my daughter Eliana and I because we

have very similar situations. First of all, I believe we live very

close to you guys, we live in McPherson, KS. Our Eliana was

diagnosed with a 50 degree right throacic curve at 6 months of age,

and we spent the next 6 months getting opinions from specilists in

Wichita, Kansas City, St. Louis MO, Little Rock Ark., Boston MA, San

TX, then finally, we were blessed by finding this group,

which led us to SLC, UT. All of the other Dr.s said she was too

young, to severe, and that bracing was our only option untill

haloing, but it would be ineffective because her curve was deemed

relentless. By one year of age, our baby was at 100 degrees, 72

degrees kyphosis, 17 degrees rotation and with an RVAD of 40, with

pulmonary failure imminent, yet she was still a full year away from

the minimum age they gave us at which time they wanted to halo and

begin fusions. (Eliana was a preemie, birth wt. 2 lbs, 12 oz, and

was still very small) Dr. D was the first who was willing to

intervene before she was at deaths door, and IMHO, the SLC Shriners

saved her life. I'm soooo thrilled you decided to pursue the

casting, even though its not mainstream. Immediately after the

first cast, though, you are probably wondering " what have we done to

our child? " because I know I was. Trust me though, that with time it

gets MUCH better. Eliana could no longer crawl or roll over at first

and was miserable, but within a couple weeks, she was stronger,

growing faster, and she is now nearly walking, and meeting her

milestones, a happy little toddler. She is in her 3rd cast now, and

is at 52 degrees, kyphosis zero, which has removed nearly all the

lethal pressure on her heart and lungs. She has grown 4.5 inches in

6 months, and is " growing " straighter every day. I'm so glad you

decided to not waste time with bracing. There are some kiddos on

this board that have had good results from it, but when they are as

little as ours, and as severe, its crucial to sieze the first two

years of optimal growth, and I think that they just adjust to the

cast better, since it never comes off, and seems to be more

comfortable. Eliana is always a little sore at first, but within a

week, you'd never know shes in a cast by her behavior. It DOES GET

BETTER! I line the back of the cast with pantyliners to keep it

clean, and have never had much problem with breakdown. If she does

get sore around the arms or hips, please try Calendula cream or

ointment. Miss Mehta from London recommends this homeopathic all

natural cream, which you can get here in McPherson, or probably any

health food store. I'm sorry this is sooo long, please post ANY

questions you have, this group is full of wonderful, knowledgable

parents willing to help. I have learned more from other parents who

have " been there " then I did from most of the Dr.s! Shellie,

, and the parents in this group were a beacon of light and

hope. Please know that although its rare, you are NOT ALONE!

Take care and God Bless!!

, mom of Eliana