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Hi all. I’m looking for information and other parents who have a child with a partial agenesis of the corpus colosum. I’m interested in hearing how this has influenced their child, treatments, etc... Is there something I should be watching for?

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My 15 month old daughter was diagnosed with a partial agenesis of the Corpus Colosum at birth as well as multiple congenital contractures. She was extremely low tone for many months. We take her to a cranio sacral therapist on weekly basis and this has shown great promise in helping her. Also, the doctors in Sacramento told us that the agenesis could cause major problems. Our geneticist initially diagnosed Shelby with Beal's Syndrome but has since changed her diagnosis to Gordon's Syndrome as this relates the contractures and the Pierre Robin/Cleft Palate. Hope this info helps
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i am responding to the page looking for other children with this diagnosis. my son is 8 and is doing extremely well for his diagnosis. he has had about 14 hours of therapy per week from 8 mos. to the past year. he has dropped to 3 hours per week because now we are working on the academics he so needed due to all that he missed through therapy. he is mainstreamed 2nd grade with one to one tutor after school 3 times per week for 2 hrs. each day. he has caught up to his peers academically. his left side is weak, moreso his arm than anything. he has had 2 seizures since thanksgiving and none before that since infancy. we are now considering meds to prevent any further. we are concerned of the side effects from these meds so until we have all the info. we will not commit. my son has struggled for these past years and has worked so hard, we hate to set him back with the meds. if anyone has an older child with similiar diagnosis or any info please email us. mysticdivingATaol.com
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