Hi-
My son Brock is almost 4 yrs old. He was born in resp. distress with pneumonia and sepsis. After a mth in ICN he came home for 3weeks only to be flown to UofI hospitals where he remained for the next 10mths. He was diagnosed with a rare cervical abnormality. He was missing his C2 and C3 vertebrae. It is so rare that it has not been named yet. I discovered he had scoliosis at age 1 1/2mths. He also had bilateral clubfoot. He has had a tracheostomy placed, g-tube, and nissen. Due to the severity of his neck he was placed in a turtle shell to stabilize his neck which caused his jawline to recess which we will surgically correct for in the near future. He is currently 26lbs and 33 1/2 cm long. No cause has been determined to explain the problems he has. We have a specialist dr for every inch of his body and so far we have been very happy with them except for this dr. I am not impressed with our current scoliosis dr. and wonder who or where we should go for the best treatment. His dr. did prescribe a brace but stated we'd better try this before we do surgery. I dont think the brace helped at all. He is also very vague- I do not know the severity of his curve but I would say it is rather pronounced and severe. Any ideas for help would be greatly appreciated!!
My son Brock is almost 4 yrs old. He was born in resp. distress with pneumonia and sepsis. After a mth in ICN he came home for 3weeks only to be flown to UofI hospitals where he remained for the next 10mths. He was diagnosed with a rare cervical abnormality. He was missing his C2 and C3 vertebrae. It is so rare that it has not been named yet. I discovered he had scoliosis at age 1 1/2mths. He also had bilateral clubfoot. He has had a tracheostomy placed, g-tube, and nissen. Due to the severity of his neck he was placed in a turtle shell to stabilize his neck which caused his jawline to recess which we will surgically correct for in the near future. He is currently 26lbs and 33 1/2 cm long. No cause has been determined to explain the problems he has. We have a specialist dr for every inch of his body and so far we have been very happy with them except for this dr. I am not impressed with our current scoliosis dr. and wonder who or where we should go for the best treatment. His dr. did prescribe a brace but stated we'd better try this before we do surgery. I dont think the brace helped at all. He is also very vague- I do not know the severity of his curve but I would say it is rather pronounced and severe. Any ideas for help would be greatly appreciated!!
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