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megan gilbride
04-28-2005, 05:32 PM
Hi,
I'm new here and any info. would help?! My daughter,Riley, was born on 02/04/04 @ 32 wks., after 3 weeks of labor, she had thin ribs, floppy, a broken arm, breech, (she was emerg. c-section),came home on O2, in the NICU for 4mo., cont. misdiagnosed, severe scoliosis( from front to back & side to side), blood trans., tons of testing, a fundo, a feeding tube w/ night pump, bruised, etc....she was recently diag. w/ "central core disease" by muscle biopsy. We are sched. to get cast by ortho. on May12th. I was wondering if this would help fix, prevent, ???? anything? They want to cast her from under her arms down to the top of her hips. She is only 14mo. and it is terribly HOT here in Texas during May, June, & July!!!! They said she would wear it for 3mo. Has anyone been cast and did it help? Any help, advise, anything would be apprec. I'm a 1st time mom and this is all very scary.
Thanks,
Megan Gilbride

Celia
04-29-2005, 10:48 AM
Hi Megan,

I read that your daughter has cental core disease, will they still anesthetize her for the cast given the risks ? If your doctor feels she would benefit from the cast despite her medical issues, I don't see any problem. Your doctor should be able to get very good correction with a cast. What degree curve does she have ? Who is your doctor ? Wearing a cast through a hot Texas summer does NOT seem ideal, nevertheless thank GOD for air conditioning !!!!





Celia

Carmell
04-29-2005, 11:29 AM
Megan,

I have a friend who has a 4yr old son with Central Core disease. She herself also has a milder form. I'd love to put you in contact with her, if you are interested. Her son also has kyphosis and scoliosis. She can give you LOTS of information based on their experiences. Oh, and Alex also has the anesthesia problem you mentioned - sounds very similar.

Let me know if you are interested!

Celia
04-29-2005, 02:56 PM
Megan,

I hope that casting will work for your daughter - we've had very good results with it. I've included the most recent standup x-ray of my daughter in the cast and for comparison purposes, I've also attached the original one.