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My son was diagnosed with Idiopathic Scoliosis in July of 2011. He has been wearing a Boston Brace for about 14 months now. At first he was fairly compliant and wore the brace with no debate or argument. As time goes on and he notices that nobody else he knows wears a brace he is becoming more defiant and less willing to wear it regularly. This is becoming a big problem for us as we are fully aware of the damaging effects non-compliance can have on his health long -term. This is very frightening for us knowing that what makes him happy now can seriously effect him negatively later on. I have nightmares when I think about him wearing the brace until he is 12 or 12. Another 6 or 7 years.
The problem is we have been searching for over a year now for a support group where he can meet other kids who suffer from Scoliosis and must wear a brace. We live the biggest city in Canada and there are absolutely no such groups around. There was one website with forums for both kids and parents dealing with Scoliosis available but that was recently disabled for reasons unknown to us. The closest group we have come across is in Ottawa...very useful. I have emailed numerous individuals from websites and even contacted the Scoliosis clinic at Sick Kids (where he receives most of his care) they have NOTHING for us. The only advise they had for us is to take him to a psychologist. JUST LOVELY. and so wrong on so many levels. If he had some other issue I'm sure he would have the option of a support group to vent his frustrations and gain understanding from other kids of how to cope but with Scoliosis he is treated like a pariah. The child has no outlet for his thoughts and feelings on dealing with being the only kid in his whole school with a brace other than speaking with his parents and teachers. It really isn't fair and we seriously need to fix this hole in the system.