For families who take their children to Cincinnati Children's Hospital for DMD/BMD medical care.
Latest Activity: Sep 17, 2015
Started by Keith Van Houten. Last reply by Amelia Nov 10, 2014.
Started by Kelvinsmom - Michelle. Last reply by Rachel Sedacca-Replogle Sep 3, 2014.
Started by Wendy Juzwiak. Last reply by Wendy Juzwiak Aug 4, 2011.
Melissa, nice to meet you. Is your son that has aspergers mainstreamed in school? Francis goes to a school for Autism called Autistic Services, Inc. of Western New York.
Sorry, forgot to mention he also is taking 20 mg Prozac daily.
Hi ~ Just wanted to give all of you my sons story, because think it might help all of you. My son Francis is 13, still somewhat ambilitory. He takes 30 mg of Deflazacort daily...weights ruffly 100-105 lbs. Not trying to scare anyone it's just the truth about Francis. Francis also was diagnosed at age 10 with Autism Spectrum Disorder, ASD....diagnosed by a nuero-psychilogist. He is doing much better since his diagnosis of ASD due to the fact he is getting the right education & therapy. Steroids affect different people in different ways. He use to take a lower dose of Prednisone & it was horrible. It made his already ASD behaviour worse, he was always angry...when he went to Deflazacort he was happy again his personallity just evened out...he still has behaviours but with the right help he has better control of himself. Please don't go it alone. Please get your boys tested for neuro-psychological things if you feel it is warranted it is imparative these boys such as those like Francis get help earlier the better. Not judging anyone here just want to make the road your traveling less stressful than it was for me. Sometimes getting control of our children doesn't always mean from us it has to be done through our boys or they need to find the control themselves. They just need us to show them the way. Alot of my parenting skills I've learned about Francis I use with my other 2 children. So it's so worth a try. Bottom line get your boys/girls tested the longer you wait the harder it will be to find the correct treatment/therapy/education. I realize that DMD & ASD are hard things to hear. Francis saw a neuro-psychologist in our home area, of Buffalo, NY so you don't have to wait until you go to Cincinnati. Hope I helped & if you have any questions please ask. :)
Hi, is anyone taking a higher than normal dose of steroids every other day. for example if the daily dose for 130 lbs boy is 40 mg, is anyone taking 80 mg every other day. or maybe 50, 60, 70 mg I would appreciate any feedback. Thanks so much.
I think some of the behavioral issues may be caused by the high doses of steroids given to these kids-- a known side effect of prednisone, etc.
Anthony had so much going on with him. Pervasive Developmental Disorder, ADD, Sensory Dysfunction, General Anxiety Disorder, and Obsessive Compulsive Disorder. Parenting techniques for typically developing children did not work for us. It was frustrating when everyone, including my parents, were telling us how to properly parent Anthony and deal with his outbursts and so on. But I digress. We did neuropsychological and cognitive behavioral testing; sensory profile and standardized motor assessment; to get a diagnosis to develop an effective treatment plan. Occupational Therapy provided many of the treatments and parenting strategies to deal with most of the above. Medications were needed in our case, and we worked with a good child Psychiatrist. We also teamed well with the Special Education Department at his school. While the behavioral challenges never seemed to go completely away for us, they did become much more manageable. I also know Anthony felt better to. I have been going to PPMD Conferences since 1998. I was amazed how many parents would express similar challenges regarding their child with DMD. It just seemed that our group of boys were more impacted by these things, perhaps from the lack of Dystrophin in the brain. In any event, there are interventions to help.
We're very lucky not to have had the cognitive or developmental issues, but the behavior is tough. Hard to tell whether it's frustration in not being able to keep up, or DMD. His docs say he does not have ADD, because he CAN pay attention to things when he wants to. He does well in school. Socially, not as well.
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