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Hi Danielle,
You are not alone in this area. We have had problems too with our son's behavior - especially at school. There is what they call a behavior modification plan in place on his IEP. They know his behavior is something that he struggles with due to OCD, ODD and Sensory Integration Disorder. A lot of it, in my son's case anyway, is due to the steroids he is on. They have heightened everything. He is also on mood stabilizing meds that have really helped. A neuropsych evaluation helped us when he started school and then I have given them lots of information about what cognitive problems SOME boys with DMD struggle with. Not a lot is known about the role dystrophin (lack of) plays in the brain but they know it has an effect. Here is something that might help you: http://www.columbia.edu:80/cu/md/index_files/Page551.htm Arm yourself with as much information as possible and make sure they read it!! Good luck to you with the school. I know it's not easy.
Karen
Danielle,
Is your son on steroids? They continually put that they suspect bipolar effective disorder on my son's clinical notes but I reject that notion and attribute it ALL (the up and down rage and easily frustrated) to steroids. I agree with the other - ADHD, OCD, and Sensory Integration Disorder. These disorders were extremely heightened by steroids. While I noticed the immaturity and that he seemed a bit "off" before he started steroids at age 5, I never noticed any of these disorders before steroids. We stopped the steroids for just 4-5 months once and they almost all went away. I have choosen to keep Daniel on the only thing that we have right now for treatment. I confide in him now about this decision and it is his choice as well to stay on the steroids. He is aware of the effects on his mood and also the effect is has on making him stronger. Daniel is on Imipramine - 37.5mg/day at night (for tics, enuresis & OCD) and Lamictal 50mg 2/x day AM & PM to stabilize mood. The Lamictal made a noticeable difference right away although he he has leveled off on it and we have had to increase the dosing a few times.
Oops, I just realized it was Brandy that asked the questions on my son's dosing. My posting is directed to both of you. Danielle and Brandy are both your son's on steroids?
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