Dylan was born in October of 2006. He was born 3 months premature for unknown reasons. I had no complications during the pregnancy, but started dilating and having contractions at 25 weeks. I was put on bed rest for 3 weeks and took terbutaline to try and stop the contractions. At 28 weeks, the labor could no longer be stopped. Fortunately, the doctor had given me corticosteroids a couple days prior to his birth which helped develop his lungs quicker and he had a pretty smooth course through the NICU.
He came home after 43 days in the hospital. We noticed after having him home a few weeks that he held his neck to the right all the time. We mentioned it to the pediatrician and she explained that it was torticollis (a tight neck muscle). She recommended physical therapy. Dylan started seeing a physical therapist in the spring of 2007. She worked on his torticollis as well as helping him to reach milestones, since he had some mildly low muscle tone which was likely due to his premature birth. He also had plagiocephaly (flat spot on one side of his head). It is fairly common in preemies and in children with torticollis.
In May of 2007, he received a STAR band helmet to help mold his head and reduce the flat spot. He wore the helmet for 3 months. In June of 2007, he was just beginning to sit and we noticed that he would slump to the right when he sat. Somehow this came up in discussion when we were seeing his orthotist for the STAR band. The orthotist asked if he could hold him a minute and he felt his spine. He suggested that we get him checked for scoliosis. We asked our physical therapist about this and she felt pretty confident that his spine was straight, but we still followed up with our pediatrician. She also thought his spine seemed straight, but ordered the x-ray as a precaution. Sure enough, the x-ray showed a 16 degree curve.
I immediately started researching infantile scoliosis on the internet and found the Infantile Scoliosis Outreach Program (ISOP). I learned about RVAD (Rib Vertebral Angle Degree) measurement and how it is an indicator for progression and saw the recommendations for getting a MRI done to rule out congenital issues. We were referred to a local orthopedic and he gave us the RVAD measurements and suggested a MRI and an echocardiogram. I also asked about a kidney ultrasound since I had read somewhere that kidney issues could be linked to scoliosis. He thought that was unlikely, but approved it as well. Dylan’s RVAD was only 5 degrees, so he recommended just waiting and watching. This seemed in line with what I had read during my own research, so I felt good about the decision. However, even though all of his tests came back normal, I noticed that the MRI results indicated a 20 degree curve which concerned me since it had only been a couple weeks since the initial x-ray was taken that showed a 16 degree curve.
I called the local orthopedic and he ordered a second x-ray. This x-ray confirmed a 21 degree curve. At that time, the orthopedic recommended a Charleston Bending Brace to be worn at night. I asked the local orthopedic about Early Treatment with casting and he did not recommend it at that time, but I got the impression he had not had a lot of experience with it. I decided to be proactive and schedule an appointment with one of the doctors who believed in Early Treatment with the Mehta style of casting for infantile scoliosis. In the meantime, we went forward with getting the Charleston Bending Brace.
Our first visit with the doctor who had been trained in Dr. Mehta’s method was in October of 2007. Dylan’s x-ray showed a 31 degree curve and while his RVAD was still below 20 degrees, it too had increased. At first, the doctor seemed a bit on the fence on whether to cast him or not, but when I showed him the previous x-rays and how rapidly the curve had progressed, he immediately recommending casting him. Dylan received his first cast the week of Thanksgiving. It took a couple days to adjust to the cast, but soon he was doing all of his normal activities. He continued to receive physical therapy and we went about our lives as usual. He wasn’t able to get in the bathtub or go swimming, but other than that the cast didn’t seem to bother him too much. He was a little delayed in reaching some milestones such as crawling and walking, but is now on target for all of his gross motor milestones.
Every 8-10 weeks we flew up to Chicago for a new cast. Out of the first cast his curve was 21 degrees. Out of the second cast, his curve was 10 degrees. He recently just had his third cast taken off and he is now down to 0 degrees!!!! He is now in a TLSO brace to hold the spine in place. He will wear this brace 20 hours a day for at least the next 6 months. The plan is to follow up with x-rays every 3 months and if he maintains 0 degrees we can take the brace off in 6 months.
