My story is about two of the sweetest little boys you’ll ever meet. Cameron (8yrs.) and Dylan (5yrs.) The two brothers have many things in common, such as huge smiles that light up their whole face, an infectious laugh, and scoliosis. Although they were both casted in plaster in Dec. 04, their journeys to that point and after are quite different. I’ll begin with Cameron.
Cameron was born on Aug. 28, 1999. Although he was born at 38 weeks, I started going into labor at 34 weeks. With medication and bed rest we held off for four more weeks. As all parents do, we thought our baby was perfect (and still do!) which is probably why it took so long for us to realize that something was wrong. While visiting Grandparents in Colorado when Cameron was 21 months old, his Grandmother noticed he seemed to lean to one side while sitting in the bath tub. We flew home to Portland Oregon the next day and made an appointment with our pediatrician. One x-ray later and our whole universe seemed to close in around us. When I first saw the x-ray, I had to ask “is that his spine?!” It was literally shaped like the letter “C”. The radiologist said he was surprised that Cameron was able to walk in. I was then given the x-ray to take with me to a Pediatric Neuro-surgeon. When I got home, I took it out, called my husband and tried to describe what I was seeing. It was then that I noticed the small marks and numbers drawn in pencil on the x-ray. It said 86 degrees!!! Up until that point, I didn’t realize that spines could actually bend to that degree…
The Neuro Surgeon wanted to rule out any neurological issues, and checked for a tethered cord. After MRI’s, Cat scans, and more x-rays it was determined that neurologically he was fine, but a tethered cord could not be ruled out. She said that it was in a gray area. We had a choice to make….. Our doctor said in her opinion the best option would be to do the exploratory surgery to find out. If there was no tethered cord, well, at least we would know. If we took a chance and didn’t do it and it was tethered, my son’s spine would continue to get worse. We scheduled a surgery date. On July 13th 2001, we found out that Cameron did indeed have an extremely tight tethered cord. Our doctor said it was like taking a rubber band and pulling it as tight as you can. Normally, they’re like a relaxed rubber band.
By the very next morning (post tether release surgery) his back looked better. An x-ray revealed a 67 degree curve!! Three months later at an appointment with an orthopedic surgeon, we found out his back had settled at 53 degrees!!! We were so excited, until the doctor started talking….. He said he’d never seen that much correction with a tethered cord release, before. Davie and I told him we believed it was because of all the prayers being sent Cameron’s way. The doctor then wanted to do surgery, either growth rods or a fusion. That was it….We were offered no non surgical options for my 2 yr. old. It just didn’t feel right. Something inside me said, “No surgery!”. Luckily my husband and mother felt the same way. I told the doctor thank you, but I would rely on prayer and faith to guide me and I just knew Cameron would be ok without surgery. Then, as always, life went on.
On April 17, 2003, Dylan was born six weeks early. After a short stay in NICU he went home. While I was pregnant with Dylan I was told by Cameron’s doctors that there was only about a 1 percent chance he would get infantile scoliosis. We even had an x-ray done before he left the hospital and it showed no scoliosis. And once again life went on, until he was about nine months old and we started to notice the dreaded curve. We were now living in Castle Rock, Colorado and were referred to a well known and respected Pediatric Orthopedic Surgeon. In January, we discovered Dylan had a 24 degree curve. So much for the 1 %. We also had and x-ray done on Cameron, and his curve was progressing. It was now back up to 69 degrees. We also found out that both boys had almost identical curves. Both going to the left, which is unusual in itself, and only one vertebrae apart. I’m told it’s extremely rare for two brothers with no family history of scoliosis to have it, let alone for it to be almost identical. Not that this fact made us feel any better.
After many sleepless nights, I was resigned to the fact that there had to be something new developed in the last three years. There wasn’t. I couldn’t believe I was given the same grim options. The next few months, I can honestly say, were the darkest of my life. My days were filled with guilt (did I do something to cause this?) dread, and self pity (why MY boys?). Then something changed. I had that same feeling I had three years ago in Portland. I knew there was something else out there. I became obsessed with the internet until one day I came across an organization dedicated to infants and children with scoliosis. ISOP (Infantile Scoliosis Outreach Program) was developed by a mother who also has a child with severe scoliosis. It is there that I learned about Dr. Mehta and her corrective, Early Treatment Method that did not involve surgery. After numerous hours “talking” with other parents online, Davie and I decided it was worth a shot. Cameron’s doctor wasn’t so sure, but he did however; agree to try casting the boys. We set a date and waited. As the date got closer I found out he wasn’t going to follow the Mehta Method that we had learned about and wanted. First, the doctor didn’t plan on using an anesthetic. Second, he didn’t plan on applying the jackets himself, his orthotist would. The thought of my boys being hooked up to their medieval looking machine (his words) and pulled and stretched while awake, bothered me. How could they get a good correction if my boys were tense and fighting them? Needless to say, we canceled and the plans to go to a properly trained center were in place. A date for Dec. 13th 2004 in SLC was set. By this time Dylan’s spine was at 39 degrees.
The first week they were casted was the hardest. Initially, the boys hated them. Davie and I cried with them while wondering if we had made a huge mistake, (more guilt) but as the day went on they slowly started to adjust. The next day they were up and playing. And since then, there is nothing they can’t do. Cameron snow boards and plays soccer; he can also do a summersault in a cast!! And Dylan is right behind him. I would like to point out an unexpected benefit of the cast that we noticed right away. Cameron had been suffering for the last year from severe constipation. He was even hospitalized for it. He was in constant pain and nothing seemed to help, not diet changes or even medications. Within a few days of receiving a proper plaster cast, he was regular! And has been ever since. His doctors think his scoliosis was some how causing the constipation issues and I believe it!
With every cast they both showed improvement, sometimes in degrees, sometimes in rotation or just in the way they looked. In May of 2005 they were cast by Miss Mehta herself. It was with her cast that they showed the most improvement. After looking at Dylan’s x-rays, Miss Mehta predicted that Dylan would experience complete curve resolution. And she was right! After examining him again in the fall of 06, she said he was done. And to this day he is still holding at 8 degrees! Cameron is also doing well; he’s at 34-38 out of cast. He has gone so much farther then anyone imagined. Without growth spurts on his side, though, there is only so much correction that can be expected. I would like to give everyone the exact amount of improvement from each cast; unfortunately we lost all our records in a house fire last summer.
I would like to point out now, how different their outcomes are. It’s like looking at a “what if” picture. Since their curves are so similar you can see how critical early intervention is! If Cameron had been treated early with casting when it was first noticed that he had progressive infantile scoliosis, I believe his results would’ve been like Dylan’s. Also, if we would have done the “wait and see” with Dylan, he would not be straight now.
From experience I can tell you how much easier it is to cast a younger child, not only because you have growth on your side, but little kids tend not to be as self conscious. As Cameron gets older, the harder it gets for him. Other kids opinions matter more and kids can be cruel when someone is “different”. Dylan never realized he was considered different. It never fazed him.
Although it is too late for me to change Cameron’s past or outcome, I hope his story helps convince others of the importance of early intervention. Dylan’s situation could have been similar to Cameron’s without early treatment. Just as Cameron’s spine could have grown straight gently & permanently with Early Treatment, just like his little brother Dylan’s. I hope by telling this story we can have more “Dylans”.
At this point we are considering options for Cameron. Our goal is to keep him under 40 degrees and get as much correction as possible. I’ll post any updates as they happen. Please feel free to email me with any questions.
