My Daughter was Born with ACC, it ulcerated the skull. Large scar, very sensitive. Can re-open with a slight scratch. all this we can deal with. She is now 4 and Her skull has closed. Things appear as normal. I recently Found a DENT in her head. Something EVERYONE Has MISSED.. They were all focused on the Large opening than the rest of her head, which also had some aplasia scars all the way to the back of her head. She gets Major Motion Sickness, At times even in the shopping cart. Her right eye sight is weak, are these connected to the disorder? If the Big hole healed, why hasnt the smaller dent, and Why did they ALL MISS IT!! I understand this is rare, but why do the Doctors know NOTHING about this. Took her back to the dermatologist, showed him the dent, he said YES thats a Dent I am not surprised, AND DID NOTHING. I am SOO FRUSTRATED I COULD SCREAM!!
I'm sorry to hear about how frustrating it's been. With the right eye being weak and the motion sickness, these possibly can be associated with the condition, though I don't know that for sure. Though the weakened eye is most likely associated with it. I don't know if they all missed the small dent or just saw it and because of it's size dismissed it as nothing major/nothing to worry about. Have you taken her to a specialist? Agenesis of Corpus Callosum is rare, so not many doctors will know what it is, as most will not see a case of it for all their years practicing medicine. There are support groups and websites that have more information. Here's one I found of a support group: http://scenicbeauty. tripod .com/AngelsAroundTheWorld.html ... hope that might help a little. Good luck with everything!
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