Discussions By Condition: Congenital conditions

please help

Posted In: Congenital conditions 1 Replies
  • Posted By: Anonymous
  • July 15, 2006
  • 05:36 PM

i have a question how can a baby with caudal regression syndrome kick its legs while still iside the mother if its missing part of its spine

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  • Very old post.. but no one ever replied to it. Just cause they have Caudal Regression Syndrome, it doesnt necessarily mean they are paralysed in their legs. My youngest daughter was born with Caudal Regression Syndrome, she can walk (thou she did use a wheel chair at times right throu her primary school years, early highschool I think was last time she used it.. i think I still have them, they only the size of a length of a ruler, she was very small). She does have the incontience due to it thou near adulthood finally gained got more control over her bowels...she still in completely incontience urine wise. Due to the Caudal Regression Syndrome, she is missing her cocoyx (sorry I cant think how to spell it) bone entirely and some of her sacrum. She has bones of her lumber spine fused together. When she was two years old we actually got told she'd never walk .. she was missing muscles in her legs (she had talipes with the Sacral Agenesis) and didnt have feeling in certain places.. she also couldnt coordinate her legs.. just move them. She took her first steps at 2 years, 4mths and used home made walking sticks to help her (her father made them).. later the crippled childrens society (nowdays called something else) made her up a walking frame she was 2 and a half or close to 3 by then. She was nearly all the time in a wheelchair till 4 (4 was last time she had surgery and plasters on legs due to the talipes) ..when we were able to cut back its use more and more. She had intensive therapy to help coordinate her legs (cross crawling exercises for over a year). Having a child with Caudal Regression Syndrome can be very hard work and it may take a lot of therapy for them to walk. We never gave up on her.. we didnt choose to believe the doctors who told us she'd never walk when she was 2 ... We found chiros and physios who gave us exercises.. exercises that are sometimes used on brain damaged children (thou she isnt brain damaged.. it was just teaching her how to move things in ways she couldnt) .. and moved her little legs in coordination daily for about an hr (she thou never has got good looking muscle tone in her legs. its like seeing skin on bone... but at least she can walk now and dont need wheelchair). She has a strange walk thou. she like threw her legs forward for a long time, swinging them forward from the side.. using other muscles or something.. seems to use stomach muscles somehow to help propel her legs forward. Nowdays in adulthood her strange walk is hardly noticable, thou she still does waddle a little.
    taniaaust1 2267 Replies Flag this Response
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