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 Kira Mullaly on April 17, 2012 at 1:56pm

Connor to a T for sure (he is 4)!  Although he is getting better.  His speech delay is a huge part of this but he also has cognitive and developmental delays.  I wonder if Jessica has the same issues. 

Comment by Tagni McRae on April 17, 2012 at 9:56am

What are the specific behaviors?  Very short fuse?  Trouble dealing with frustration?  Won't listen or follow instructions?  Mean to little sister? 

Comment by Jessica Rownd on April 17, 2012 at 9:19am
Wow sounds like we are all in the same behaviour boat. Going to get Wyatt evaluated tjis summer. Fingers crossed we can get thisbehaviour under somekind of control. I believe it is part himand part parenting after Dday.
Comment by Tagni McRae on April 16, 2012 at 1:49pm

Most of the people I have heard about got it done locally.  But I'll bet Dr. Irina or the others at Cinci could make a referral.  We have not had it done yet, but take our son to a licensed social worker for counseling. Not sure if it's a true DMD-caused behavior issue or just lack of limit-setting and consequence-giving by us!

Comment by Kira Mullaly on April 16, 2012 at 12:50pm

I can't wait for PPMD to post all the conferences to the site!  I'll be sitting in front of my computer for quite a while.  Do you know if parents typically find their own neuro-psychologists or do an eval at Cincinnati for example?

Thank you for letting me know your thoughts about Dr. Rybalsky.  I feel far more comfortable seeing her in July.  Thank you.

Comment by Tagni McRae on April 16, 2012 at 12:41pm

We also had behavioral concerns and she discussed it with us, although she's not a behavioral specialist.  But she has a lot of patients, so can refer to their experiences.  Know that lots of the parents in our area have gone to neuro-psychologists for evaluations.  Just talking about that at our FACES meeting yesterday! 

Comment by Kira Mullaly on April 16, 2012 at 12:34pm

Thank you.  Does she see folks who live in Cincinnati only usually?  This will only be our second visit so we aren't even sure what to expect.  We also have behavioral concerns and didn't know if she "knows" about this kind of stuff too.  Connor is not on steroids yet but will be starting next week.

Comment by Kim Simpson on April 16, 2012 at 12:18pm

We go to Dr. Rybalsky. and we really like her.

Comment by Tagni McRae on April 16, 2012 at 12:01pm

We have gone to Dr. Rybalsky for several years and we love her.  She is really great with Graeme and passionate about treating DMD in general.  Also very knowledgeable about research and related topics.   

Comment by Kira Mullaly on April 16, 2012 at 11:47am

Anyone see Irina Rybalsky in Cincinnati?  What do you think of her?  Are the same tests, etc. done as Dr. Wong?  We need to go to Cincinnati in July due to insurance/planning/etc. (resets August 1st) otherwise we have to wait until we meet our deducible which we aren't sure when that will be.  Dr. Wong doesn't have availability until September so it's Dr. Rybalsky or wait until next year possibly.  Anyone seen Dr. Rybalsky?  What are you thoughts about her?

Thanks,

Kira

 

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