William's Story

William is now 14 months old.  He was diagnosed with Infantile Scoliosis October 2009 at 10 months old.  William started his life very normal.  At about 3 months old we noticed he had trouble keeping his neck straight.  We consulted our pediatrician and he was diagnosed with Torticollis.  He started working with a therapist to lengthen the shortened muscle in his neck.  At 6 months old we noticed a pretty profound bulgin of his ribs and what we thought was thickening muscles in his back near his shoulder.  William had a cervical x-ray when he was diagnosed with Torticollis so we asked his pediatrician if his x-ray showed anything abnormal.  The radioligist report showed "no obvious abnormality".  Our pediatrician told us all was fine, that the muscles were probably positional from the torticollis.  We continued to work with his therapist with more concern for his back and ribs, but we trust our pediatrician and didn't want to question.  At 9 months with many months of therapy we were still having concerns with his torticollis.  We had First Steps of Indiana called in to evaluate him for developemental delays such as crawling, walking, etc... During his evaluation the therapist asked if we had a x-ray of his spine.  We said yes with no abnormailities.  She said we should have a new one because his spine disappears under his muscle.  We called the pediatrician and had one retaken.  The new read was possible positional error, 28 degree curve may be present.  We went to a surgeon in Indianapolis who said yes it's scoliosis, but will self correct.  They advised us to wait 4 months and retake his film.  We chose not to wait and went immediately to Chicago Shriners who use derotational casting to correct infanitle scoliosis.  He retook the film and said both the original and new film show a 67 degree curve.  Also he said his original film from 6 months ago also showed a significant curve.  We were dumb founded.  How could this have happened, 2 films misread by the radioligist in our hometown and the specialist in Indy.  William was casted a week later in Chicago by Dr. Peter Sturm, Chief of Staff, Chicago Shriners Hospital.  He was corrected in cast to 20 degrees.  We are now out of cast for 10 days awaiting cast #2.  Wait and see could have led him to immediate spinal surgery or halo traction therapy.  Thank God for Chicago Shriners and our friend who led us there!  Thank you to our sponsor who supported our journey!  Stay posted for more updates and more lucky kids stories.  Please know not all endings are happy and we are no where near the end of this story.  We are at the beginning of this journey and I hope to show the good and the bad on this blog!  Follow along, share your own story and pass the word.  Early treatment is the key to the best outcomes, but all outcomes that help children are worth reading.