Cincinnati Children's Hospital Medical Center

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Cincinnati Children's Hospital Medical Center

For families who take their children to Cincinnati Children's Hospital for DMD/BMD  medical care.

Website: http://www.cincinnatichildrens.org
Members: 193
Latest Activity: Sep 17, 2015

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Comment by Wyatt's Mommy, Melissa on April 17, 2012 at 8:41pm
Nice to meet you too. Anthony attended our local public school for elementary school. Where he attended an autism program half the day and was in his general ed classroom the rest of the day. Since 6th grade he has attended an online public school program that is funded by washington state. He's in high school now and has 6 teachers attends online lecturers (very similar to online college courses) and submits all his assignments and tests for grading. For him lack of maturity and social acceptable behavior are his weaknesses. Our local school district couldn't provide for his needs so we looked elsewhere. Best decision I have ever made for him.
Comment by Suzanne Desmond on April 17, 2012 at 8:28pm

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.

Comment by Wyatt's Mommy, Melissa on April 17, 2012 at 8:13pm
Thank you suzanne for sharing that. I have a son who doesn't have dmd who has aspergers. His neurologist told me that boys with dmd do have a slightly higher chance of other neuro disorders, seizures and autism being 2 of them. So you are 100 percent right. If you think for a second that our dmd boys might have something else going on get them tested. My apergers son couldn't handle himself emotionally at all. He was diagnosed with aspergers at 9. He is now almost 16 and doing amazing. We found the right educational program that made all the difference. After dmd believe me with the right intervention autism disorders truly can be managed. Good luck.
Comment by Suzanne Desmond on April 17, 2012 at 7:49pm

Sorry, forgot to mention he also is taking 20 mg Prozac daily.

 

Comment by Suzanne Desmond on April 17, 2012 at 7:46pm

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.  :)

Comment by Donna Cicardo on April 17, 2012 at 7:06pm

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.

Comment by Wyatt's Mommy, Melissa on April 17, 2012 at 6:08pm
I agree with lisa. Wyatt started steriods when he was 3 1/2 (aug 2011) he is still able to keep up with his peers so I think its steroids not the DMD. It reminds me of a 2 year old tantrum. It has gotten better now that his body is more used to it. He takes 11 mg of deflazacort.
Comment by Lisa Mancin on April 17, 2012 at 5:59pm

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.

Comment by Thomas Hoel on April 17, 2012 at 4:02pm

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.

Comment by Tagni McRae on April 17, 2012 at 2:00pm

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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