Bad news- discouraged!

[Guest guest]

Hi all,

My son, Simon, just turned 23 months and is in his 2nd cast, 3rd to be applied

April 30th. They do x-rays around 4 weeks after the cast is applied. In the

first cast he went from 40 degrees to 36 degrees, which they were happy with as

they weren't trying for a lot of correction to begin with. Last week was his

x-ray in the 2nd cast and we were told that there was no change, but to our

untrained eyes the curve seems worse, and his hips no longer are symmetric. This

was the first time they took a standing x-ray instead of lying down, so I can't

be sure if we were holding his knees correctly or not (took 2 of us to hold him

up and steady as he's not walking yet). The doctor says that because there has

been no improvement, that tells him that Simon's spine is too stiff for casting

to be helpful and he will definitely need surgery in the future. We are really

sad and discouraged about this - was not what we were hoping for! On one hand we

would like to continue with the casting just to be sure it won't improve. He's

only been in a cast since January, so seems premature to just throw in the towel

already! We really believed we were doing the best thing for Simon and giving

him the best chance of improvement. But on the other hand he's been having such

a time with the casts: so uncomfortable, needs ibuprofen to sleep at night,

consistently losing weight so that they won't remove his g-tube even though he

had been taking everything by mouth (now we're back to tubing extra calories at

night) <sigh> Since he's low-tone, the extra weight of the cast has worsened his

pronation so now he's also fitted with foot/ankle braces. If his spine really is

too stiff for the casting to help, should we stop putting him through the

general anesthesia and everything else involved? It's so hard to all-of-a-sudden

not know what the right course of action is. The doctor isn't real forth-coming

with information and my husband wasn't at the appointment. I always have to

think my questions through ahead of time and write them down, where my husband

is so good at asking questions off-the-cuff. The doctor only said that the goal

should be to keep the curve from progressing until he's old enough for surgery,

and mentioned the possibility of a brace. When we see him on the 30th for

casting, hopefully we'll be able to discuss the plan further. Sorry this is so

long - thanks for " listening " . We welcome any input!

-Patrice