From One Bracer to Another Mary Rodts, R.N., M.S., M.S.A., O.N.C. Rush Presbyterian - St. Luke's Medical Center There are times when bracing for scoliosis raises so many questions. Why me? What will the other kids say? Parents may ask “What did I miss?” Let’s try and answer some of those.   SHOULD I HAVE CAUGHT THIS SOONER? First of all Mom and Dad, don’t blame yourselves for “missing” the scoliosis. The fact is, is that you may not have missed it at all. During pre-adolescence and adolescence, your kids bodies have been changing rapidly and they often do not let parents view their bodies like when they were smaller. It is true, that when they were young, you knew every little scratch on their bodies. Life changes when adolescence occurs. It is not until you see them trying on a dress or running across the pool deck that this curvature in their spine is noticed. You are not alone. As you speak to other parents, you will see that they too feel like they “missed” something. The best thing you can do for your child now is to have him/her evaluated by a knowledgeable spine care provider who can tell you exactly what form of treatment is best. Be sure that the person you are seeing has current knowledge of what treatment is available for spinal deformities. You may want to contact the Scoliosis Research Society (SRS) for a list of its members near where you live. Members of the SRS are physicians, nurses and other health care providers with a special interest and expertise in the management of spinal deformity. WHY DO I HAVE TO WEAR A BRACE? Your physician has decided that your scoliosis is best taken care of with brace treatment. Bracing for scoliosis will help keep your spine as straight as possible and you know that is very important. While bracing is not an easy thing to do, most kids your age can do it if they just put their mind to it and say everyday “I know that I need to do this to keep my spine as straight as possible. This will be worth it!” HOW DO I GET A BRACE MADE? Your doctor will decide what brace is best for you. There are many different kinds of braces and the one that is best for you will be chosen because of where your curve is located in your spine. Your brace will be made by an orthotist. This is a person who has gone to school to learn how to make all kinds of braces. He knows how to make arm and leg braces in addition to spine braces. He is very knowledgeable and will help answer some of your questions. Depending on what kind of brace you will need, you may need to have a cast put on for just a few minutes, so the orthotist has a perfect mold of you. You will be totally covered with a t-shirt type garment while the brace mold is being done. The orthotist will explain everything to you so that you understand how your brace is being made. The brace mold will take under ten minutes. It will take a few days to get your brace made and then you will become an official brace wearer. BRACING IS A COMMITMENT Just like playing a sport or a musical instrument, getting good grades or being someone’s best friend, it all takes a commitment from you. Your doctor and nurse will speak to you about bracing and how many hours per day you need to wear it. Once you know the plan, you need to figure out how you are going to do it. Normally, your doctor and nurse will try and work with you so that for your most special interests, like being on the swim team, you will be allowed that period of time out of your brace. You will need to decide what is most important to you and discuss this with you doctor or nurse. Make your weekly plan and then stick to it. While you will need to wear your brace for a while, and that differs from kid to kid, it will not be forever, just until you stop growing. Ask your doctor for a “guessimate” (an educated guess is how I define that) of how long you will need to wear your brace. Your doctor will be able to give you an idea, but it really depends on how fast you finish growing and everyone is a little different. WE ALL NEED FRIENDS Of course there will be days when you think that this is really stupid. Those are the days that you need a buddy to talk things out. Sometimes your best friend is the person you can count on. Talk to that friend about bracing. A good book to read about life with scoliosis is There's an S on My Back : "S" Is for Scoliosis by Mary Mahony and published by Redding Press. Your friend can read it too. Make it a friend helping a friend thing. Have your friend log on to this website to learn more too! Don’t try and hide your brace from everyone else. This will drive you crazy. Sometimes having the school nurse speak to the other kids in the school about scoliosis helps. Everyone needs to know that you are just a very normal kid that needs a brace for your back for a while. Just like kids where braces on their teeth, you are wearing a brace on your back to help hold it straight. Maybe you can have a sleepover with the kids in your class so that you can introduce your new friend (your brace) to all your old friends. Remember, keep a positive attitude! You can do this! THE KIDS MAKE FUN OF ME You know what, there will be some kids that will say really dumb things. And those are the kids that just don’t understand what you are going through. Parents and teachers can help out here. If that kind of stuff starts, let someone know. Don’t try and go it alone. Parents can speak with other parents and the teachers can remind the kids what this brace thing is all about. MY BRACE HURTS The first few days of brace wearing can sometimes be difficult. Just like getting used to a new pair of shoes, you will have to get used to your new brace. At first, there may be some places under your brace that will be uncomfortable. They are called pressure points. Your skin will get used to these pressure points after a few days but may take up to a couple of weeks to feel really good in your new brace. At first both you and your parents will think that you will never be able to get used to it. But trust me, you will. The orthotist who made your brace may need to make some adjustments for you to make it feel better. You and your orthotist will become very good friends! Your doctor and nurse will tell you how many hours you should wear your brace during the first few days of brace wear. Normally, you will wear it just for short periods of time at first, gradually increasing the time each day. By the time two weeks of brace wearing has passed, you will be a pro! I HAVE A SORE SPOT UNDER MY BRACE For the first few weeks of brace wearing, you will need to check your skin each day to be sure that your brace is not causing any real sore spots. If there are any really red spots or sores, show your mom or dad. It is a really good idea to let your folks help you with your brace and look at your skin at first. As you have been in your brace longer, you can inspect your skin and let your parents know if there are any problems. If you have a sore, remove your brace and call your doctors office to get further instructions. Normally, you would leave your brace off until the sore is healed. That is why it is so important to prevent skin problems because your brace is not helping your spine stay straight if it cannot be worn. TO PREVENT SKIN PROBLEMS Your doctor and nurse will give you specific instructions on how they want you to manage your skin under your brace. You should always wear something snug under your brace to protect your skin from the brace as well as absorb perspiration that will occur. You will get a little wet under your brace and you may need to change your t-shirt a couple of times per day in the warm weather. Even small wrinkles in the wrong place under a brace can cause a skin problem, so be sure to take the time to smooth your t-shirt out and apply your brace correctly. WHAT ABOUT GYM CLASS? Most doctors want you to participate in a normal gym class and most will allow you to take your brace off for that time period even if it is each day at school. It is important for all of the kids to see you just being your old, normal self. Your school nurse or gym teacher may be able to find you a place to slip out of your brace. At first you will think that you will never be able to get back in your brace, but you will. Faster than you can imagine with practice! At first, it would be good for your mom or dad to show your school nurse or gym teacher how to help you. You won’t need anyone’s help for long. You will become an expert! I WILL NOT WEAR THAT BRACE! Of course, it is totally up to you if you are going to wear your brace or not. Your parents cannot force you to do it. They can talk to you about it, but it is really up to you. If your doctor has decided that you need it, it is because he thinks that your scoliosis will get worse without it. If you choose not to wear your brace, you need to know that if your scoliosis progresses, it may need surgery to correct it and stop it from getting worse. Surgery is not the worst thing in the world and lots of kids with scoliosis have surgery every year. But, if you have a chance of finishing your growth with just a small curve, that is what should be tried first. The most important thing to remember is that it is not forever, even though sometimes you feel that way. It will be necessary to wear it just until you finish growing. So hang in there and be tough. You can do it. SUCCESS One day, once you have finished growth, after you have been slowly decreasing the amount of time you have been wearing your brace, your doctor will say that you can throw it away. On that day, you will smile and cry at the same time. You will know that you have done the best thing that you can do for your back. You will be able to say, “I did it” and know that you can go on with a very normal life with little worries. And believe it or not, you will miss your brace. You will see! Spinal Bracing Bracing for Adolescent Idiopathic Scoliosis Idiopathic Scoliosis Scoliosis