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Hi: My son Jeff recently turned 16 and was diagonsed with Scoliosis in September of this year. I know that I am not the first parent to state that I was freaked out and scared to death when I first realized at home that my Son had scoliosis. It was a Friday and he had just finished his shower and bent over to pick up our dog from the floor. I happened to glance over at him, his shirt was off and I noticed that one side of his back was higher than the other. I knew right away that something was wrong. I kept my composure looked him over well and he went on his way. I have a Respiratory Therapy degree and had studied scoliosis in school and knew what it was. That weekend was the longest ever. I sat at my computer and searched the web, and had even figured out what his curve probably was. He is thin, so his spine is quite visible. We went to the peds, who confirmed and sent us for an X-ray. The Dr. called me at work and confirmed that his curve was 29 degrees, I estimated about 22. He gave me the name of a Doctor and I began to research Dr. options in my area. I actually chose a Dr. out of Children's Hospital in Detroit. I felt comfortable with my choice as I did a lot of research and actually interned at Children's myself as a student. We were able to get an appointment quickly. After another round of x-rays it was determined that my Son has a 32 degree curve as well as two smaller curves lower in the spine at 22 and 18 degrees. His chest in the front is also bowing out a bit on one side. The odd thing about my son's curve is that he looked absolutely straight from the back. The Dr. said that the curves were unusual, and it was luck that I found the curve (probably because of my training). It was not visible just looking at him.
They measured his growth plates and determined that he was only 50% done growing and had a lot to go before he was done. We agreed to put him in a TLSO brace. At first, Jeff was not happy with a brace choice. He said he would not wear it and did not want to hear of it. I was freaking out. First, I was dealing with the fact that my boy had a condition that I only thought girls got. Then with any time, it was and still is difficult accepting the fact that your child has to deal with something that is life changing and that there may be challenges ahead. We also met our orthotist that day at Children's who talked at great length about the brace, compliance etc. Jeff was measured and he got his brace just after Thanksgiving. At first, it was difficult for Jeff. He was OK about everything, but he did not like to wear it. Then came the big trial with wearing it to school. Then things started to come in place for Jeff.
My Husband and I talked with Jeff about how he could address the issue with his peers, and Jeff said, I just will tell them the way that it is, and he did. You cannot see his brace under his clothing because as most boys do, the clothes are loose and baggy. The one great thing is that I am no longer telling him to pull up his darn pants because the brace kind of stops them from falling down too far. His orthotist being the "guys guy" gave him a tip on how to shimmy the jeans down a bit. (oh well). I am happy to report that Jeff is wearing his brace 23 hours a day. We are having issues with skin irritations and him experiencing some difficulties because the brace is so tight.
We went back this week for a two month visit, and the Dr. said his top curve corrected 6 degrees and the other curves did not really correct at all. He was pleased that Jeff is wearing the brace but did say that it would be a difficult curve to keep corrected but we were going to fight hard. Now, I was not expecting that, and freaked out again (in my head only, not in front of Jeff) So I am kind of back to being scared about the future. I guess I need to remember that I really cannot make this better, and that is the hard part.
Jeff is taking this so well, I am very proud of him. He loves to ask people who dont know he wears a brace to hit him in the stomach or back, and then gets a kick out of their reaction! I tell him that one day, someone is going to knock him over. He just laughs. His friends just think it is no big deal. He works and the people at work know, but no real problems there either.
I would love to connect with other parents in the area who have children with scoliosis boys or girls. Obviously it would be nice for Jeff to connect with other males as it does seem so rare for boys.
I know as my Husband and I go through this journey with Jeff, there will be many fears and happiness, I just have to keep thinking that it will all be ok and deal with things as they come along. I cannot imagine us having to make a decision about surgery. But I also know that we may not have any other choice if the curves continue to progress. I am just so greatful that Jeff bent over to pick up the dog that day. Boys at that age can be so modest. It would probably have been much worse before we knew.
I would like to offer support and I think that Jeff would love to talk with anyone who needs support especially other guys. He is active in Marching Band and plays baseball. He even completed his weight training class this semester with no issues.
Sharon
They measured his growth plates and determined that he was only 50% done growing and had a lot to go before he was done. We agreed to put him in a TLSO brace. At first, Jeff was not happy with a brace choice. He said he would not wear it and did not want to hear of it. I was freaking out. First, I was dealing with the fact that my boy had a condition that I only thought girls got. Then with any time, it was and still is difficult accepting the fact that your child has to deal with something that is life changing and that there may be challenges ahead. We also met our orthotist that day at Children's who talked at great length about the brace, compliance etc. Jeff was measured and he got his brace just after Thanksgiving. At first, it was difficult for Jeff. He was OK about everything, but he did not like to wear it. Then came the big trial with wearing it to school. Then things started to come in place for Jeff.
My Husband and I talked with Jeff about how he could address the issue with his peers, and Jeff said, I just will tell them the way that it is, and he did. You cannot see his brace under his clothing because as most boys do, the clothes are loose and baggy. The one great thing is that I am no longer telling him to pull up his darn pants because the brace kind of stops them from falling down too far. His orthotist being the "guys guy" gave him a tip on how to shimmy the jeans down a bit. (oh well). I am happy to report that Jeff is wearing his brace 23 hours a day. We are having issues with skin irritations and him experiencing some difficulties because the brace is so tight.
We went back this week for a two month visit, and the Dr. said his top curve corrected 6 degrees and the other curves did not really correct at all. He was pleased that Jeff is wearing the brace but did say that it would be a difficult curve to keep corrected but we were going to fight hard. Now, I was not expecting that, and freaked out again (in my head only, not in front of Jeff) So I am kind of back to being scared about the future. I guess I need to remember that I really cannot make this better, and that is the hard part.
Jeff is taking this so well, I am very proud of him. He loves to ask people who dont know he wears a brace to hit him in the stomach or back, and then gets a kick out of their reaction! I tell him that one day, someone is going to knock him over. He just laughs. His friends just think it is no big deal. He works and the people at work know, but no real problems there either.
I would love to connect with other parents in the area who have children with scoliosis boys or girls. Obviously it would be nice for Jeff to connect with other males as it does seem so rare for boys.
I know as my Husband and I go through this journey with Jeff, there will be many fears and happiness, I just have to keep thinking that it will all be ok and deal with things as they come along. I cannot imagine us having to make a decision about surgery. But I also know that we may not have any other choice if the curves continue to progress. I am just so greatful that Jeff bent over to pick up the dog that day. Boys at that age can be so modest. It would probably have been much worse before we knew.
I would like to offer support and I think that Jeff would love to talk with anyone who needs support especially other guys. He is active in Marching Band and plays baseball. He even completed his weight training class this semester with no issues.
Sharon
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