Evan was born August 7, 2005, four weeks early, but overall, a wonderfully healthy baby boy. As a mother, I thought that my baby boy was just perfect! I did, however, notice that his ribs did protrude quite a bit on both sides. I attributed this to him being a chunky little boy! A very dear friend of mine discovered at four months old that Evan displayed some characteristics of scoliosis and we referred this concern to his pediatrician.
We made an appointment at Wake Forest University in the pediatric orthopedic department. While waiting for Evan’s appointment, we noticed a progression in his curvature. He slowly began to lean more to his right side in his car seat and swing. Evan was evaluated in November at WFU and was diagnosed with infantile scoliosis. We had SO many questions and felt unsure of the recommendation- to “wait and see” if Evan’ s curvature would progress. As a mother, I didn’t feel comfortable with the options we had been given and began to research.
After reading ISOP’s website, I was determined that Evan needed to have an MRI done to rule out any abnormalities and we had his MRI on 12/31/05. During this time, I noticed that in addition to his body curving to the side, that he had a hard time with turning his head past the midline. We visited a pediatric neurologist and he was diagnosed with torticollis. I was concerned with the difficulty I saw that Evan had moving his head and neck. His pediatrician agreed that he needed physical therapy to help with the torticollis, which resolved around 13 months. After researching and finding the wealth of information that I did on ISOP’s site, I made and appointment at Duke University for a second opinion. It was confirmed in January 06 that Evan indeed had infantile scoliosis, and determined that Evan fell into the progressive type of scoliosis. His MRI showed that his scoliosis was not congenital and that there were no structural abnormalities. At the time, Evans curvature(s) measured at 32 degrees and his RVAD mid 40’s. We shared the DVD that I received from ISOP on the effectiveness of early treatment for progressive infantile scoliosis, and were amazed that all the doctors my son had seen, were recommending bracing or surgery.
We decided to take Evan to Shriner’s in Erie, PA. and he was evaluated in early February. The doctors there agreed that Evan was a candidate for Early Treatment, and on March 14th, Evan was in his first POP (Plaster of Paris) cast. His curvature started out at 46 degrees and his rotation of his ribs was at 64 degrees. Out of his first cast he was 28 degrees with a RVAD of 38. His second cast was applied and he was at 19 degrees in this one! Evans 3rd in-cast measurement was 21 degrees, 4th cast -16 degrees, 5th cast-13 degrees, 6th cast- 11 degrees! What a blessing! Evans doctors say that as long as his curvature(s) dont progress any, after his seventh cast he will be ready for a brace that will be worn 23 hours per day. He is currently in his seventh cast and will be fitted for a brace in March 2007!
Brandon and I are so thankful for these wonderful organizations that have given so much, to my son and my family. They have given us hope, where there was little. The numbers speak for themselves-correction is being achieved for Evan and for many other children across the USA, and abroad. ISOP has given my family and many other families a wealth of information and resources that are invaluable and Shriner’s in Erie, has been a wonderful place to receive Evan’s care. I am in the process of organizing a fundraiser for ISOP and Shriner’s in Spring 07. I want to give back just a part of what was given to us: HOPE.
If your daughter, son, granddaughter, grandson, nephew or niece has a non-resolving case of progressive infantile scoliosis, you have every right to demand the right treatment. Follow the guidelines on ISOP’s website, have all tests done to rule out any abnormalities such as an MRI, order “A New Direction” DVD and arm yourself with all of the knowledge you can. We initially had no hope or anywhere to turn to help our little boy, but thanks to Early Treatment, we had promising options. We had the opportunity to meet Dr. Mehta at the ETTP in Philadelphia, PA in the fall 06, and I felt so very encouraged after her examination of Evan. Thanks to Dr. Mehta’s hard work and dedication, our children are receiving the Early Treatment they need without the need for invasive surgery with such a gentle correction. Evan’s spine has gently been trained to grow straight through the series of 7 casts that he’s had applied. We look forward to the brace in March and time that Evan can enjoy in the bath and pool, but are thankful for the awesome correction we’ve received with the Early Treatment casting process.
Brandon and Jenny
Related Story: Read more about Evan and the bluegrass benefit called HopeFest that was held in April, 2007 and organized by Brandon and Jenny. Click here to read the article.