Hi Michelle,
Our son so far has only had the recent x-ray and a visit to the pediatric orthopedist, so for him his life is unchanged. I try not to mention scoliosis to either of them much, but I always make sure they know I will answer any question they have. I think at this age it is so important to try and explain things in a way they can understand, without scaring them about years and years of brace wear or possible future surgeries. I try to explain things to them as they come up. Unfortunately my son already told me he will not wear a brace, no way no how. He remembers our struggles with our daughter. He knows that surgery may be in his future, and since he saw how well Leah got through it, he is not overly fearful of it.
As far as my daughter, I tried to be as matter of fact as possible. I let her see her x-rays, and pointed out that the curve was "just a little curvy" because she confided in me originally that she was afraid her back was shaped like a pretzel inside. She was really relieved to see and hear how the curve actually was, vs what she feared it was. That was an eye-opener for me. I explained to her that the doctor wanted her to wear the brace so that the curve would not get more curvy as she grew. I always told her that the brace would not make her back straight. I never threatened surgery as a negative consequence of failure to comply with brace wear. I have heard of too many parents who threatened their children that they would need surgery if they did not wear their brace enough, then the parents had created an unnecessary fear of surgery in the child that became a problem if the child actually needed surgery later. I always let Leah know that surgery was a possibility, that she would have some say in the decision, and that we would stay with her and take care of her if she needed surgery. When she asked how long she needed the brace, I would tell her that I didn't know the answer to that (truth), but that her doctor had asked her to wear it at least until the next x-ray. Of course as she got older she wanted to know more details and I tried to give them as I thought was appropriate.
We are hopeful that VBS is the only surgery Leah will need, and her doctor shares that hope and expectation. The odds we were given were 80% chance of not needing any further surgery. To us that sounded so much better than brace for 9 years then fusion for sure!
I cope with the stress and uncertainty of scoliosis by learning everything I can about scoliosis and treatment options. For me knowledge is power. Over time you will fall into more of a routine that includes the brace, and it gets easier to cope with the stress of having a child with a long-term orthopedic condition. I don't want to wish for my kids to be grown up too soon, so I try really hard to not focus on the scoliosis and just enjoy their childhoods as much as possible. I still get nervous before their x-rays and dr appts, but I think I have come to a place of acceptance that we also have this condition to deal with. I gain a lot of support from this forum and another, located at www.vertebralstapling.com. The latter is run by several moms who have kids who have been braced and had stapling. There are quite a few families there who have JIS kids, more than here, and we spend plenty of time discussing bracing and how to cope, and not just surgery. Feel free to check it out and join us if you wish.
I hope the $ incentives will help over the summer with your daughter. Swimming is also a great thing for them, and some doctors let it count as in-brace time. Glad to hear her MRI was fine.
Let me know if you have any more questions.
Last edited by leahdragonfly; 05-22-2012 at 11:55 AM.
Gayle, age 50
Oct 2010 fusion T8-sacrum w/ pelvic fixation
Feb 2012 lumbar revision for broken rods @ L2-3-4
Sept 2015 major lumbar A/P revision for broken rods @ L5-S1
mom of Leah, 15 y/o, Diagnosed '08 with 26* T JIS (age 6)
2010 VBS Dr Luhmann Shriners St Louis
2017 curves stable/skeletely mature
also mom of Torrey, 12 y/o son, 16* T, stable