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Child diagnosed with cole carpenter syndrome. Foot deformity, loose joints, scoliosis, developmental milestones delayed. Possible treatment?

Hi my 10months old baby girl has been diagnosed with cole carpenter syndrome . She was born with right foot deformity , right hip dislocation (well located back at 4 th month old), healed of right rib fracture , broad rib cage, leg length discrepancies, very loosen joints especially at both knees, weighed only 4lbs, 10oz at 37weeks. Recently, we noticed her scoliosis but have no idea how the percentage curve. She also have a very clicky joints, we can hear the sound all over her body but have not had any fracture since birth. Both her legs are thin, with poor muscle tone, but she does kick her legs often. She is very floppy, so we have to carry her with both hands still. Her developmental milestones are extremely delayed, she is 10m now, but cant sit up, we are not sure if it caused by the scoliosis. She has not got any treatment so far. Can any doctor tell if she required any treatment? How her future looks like? Can she walk?
Asked On : Wed, 18 Apr 2012
Answers:  1 Views:  109
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Psychiatrist 's  Response
Jun 2013
Hi there ~

I understand your concerns. I am sorry that your child was diagnosed with cole carpenter syndrome and there may be no real cure for the condition. The delayed milestones may be due to that reason. I also hope that you get him the right therapy in terms of visits with pediatricians to assess growth and development and obviously physiotherapy to get the maximum out of what she can achieve to be able to live independently in the future. I hope a visit with a pediatric orthopedic doctor would help in treatment. I wish you all the very best.

Take care and have a lovely day!
Answered: Sat, 25 May 2013
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