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Anyone out there: Agenesis/Dysgenesis Corpus Callosum?


SailorMom
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So - turns out my 12 yo son may have this. Long story dealing with primary care docs who thought I was a hypochondriac, but I'll skip that. DS had his first appt with a neuropsych yesterday. He will soon be going in for 6 hours of testing, and I am working on a referal to a neurologist as well.

The neuropsych's initial diagnosis was either partial agenesis or dysgenesis of the corpus callosum.

So - anyone else go through this testing and dignosis? What should we expect?

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No, but I am hoping someone else can give you some info. We got some pretty vanilla, run-of-the-mill diagnoses from our neuropsych. eval this summer, compared to yours.

 

Hoping you find some good info.

Edited by RamonaQ
and to clarify, I am not making light as the need for any diagnosis from a neuropsych. is neither light nor fun
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I'm not any help (not btdt at all), but I recognized the term from some shows on TLC. Googled it, and turns out it's an issue in primordial dwarfism, something they've done a lot of shows on over the last few years. Maybe that's not at all connected to what you're dealing with? In any case, you might try connecting to groups like that. Some of these problems are so rare...

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No - not in our case. There are a bunch of things that can cause it. My son has a chromosomal defect (translocated 13th chromosome), pregnancy was horrible, and I was told way back then that his brain was forming "asymetrically". Wish I had had google back then!

Physically - you'd never know.

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You know - I've been fighting for years. It seems like docs just either don't care or don't have a clue. I was so thrilled to find this neuropsych guy. I felt heard for the first time.

Pretty pitiful that he is 12 and if it wasn't for me, no doc would have even looked into it. And I had to PUSH for that. Grrrrrrr.

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Thank you :grouphug:

I have a ton of guilt as well.... 3 years of the wrong speech therapy, a year of pointless OT - both therapists telling him he wasn't trying hard enough - he would leave in tears.

I feel like I've had to get a BS in special ed and neurosci/psy myself!

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Oh, I didn't mean it was the same. (It was late when I was typing.) I just meant if other problems also involve it, you might find support or help or ideas within the support groups for those other problems. I know they talked on tv about doing mri's and scans for these kids (primordial dwarves with corpus callosum problems) to watch for strokes. There were docs who specialize or have more experience in it.

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