Searching for ACC experts

Agenesis of Corpus Callosum
#1

I am looking for some advice. My daughter Caroline, in addition to C-ACC, has seizures and has been having behavioral problems since starting first grade this year with an IEP. We are interested in getting second opinions in regards to the adequacy of her IEP, how to best deal with the behavioral issues we are having with her, and also in regards to her seizure medications and how they might be affecting her behavior and ability to learn. We are looking for those who would be considered the experts in the fields of 1)Children with ACC and/or 2)Pediatric neurology that would be willing to meet with us and/or review Caroline’s case. Does anyone have any recommendations?

Caroline has a pediatric psychiatrist and neurologist in our town but we feel that we need to get second opinions, preferably from those with experience in dealing with kids with ACC, to make sure that we are doing all we can for her.

#2

I will be out of the office Friday November 7th, returning Monday November 10th. If you need immediate assistance please contact Rod Rodgers, Director of Field Operations
Thank you,
David Beal

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#3

I just joined this group. My daughter Julia is having a horrible time in school. She just started kindergarten this year and is only able to go an hour and a half a day so far : ( She is having all kinds of behavior issues as well and I am at wits end. I am looking for support here and want to offer suppport to other parents. I know what you are going through …LJ

#4

hoseyjr,

I am a 38 yr old with ACC diagnosed only 2 years ago. I’m not usre where you are from state wise, but I do know of two people out in California that are studying those of us with ACC and would be able to give you more info or even an evaluation if you’d like. I’d be happy to give you those names if you like.
Dori 38-C-ACC