Any other Parents have a child with Absent of the Corpus Cellum and Seizure disorder?
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Jaime - posted on 10/01/2011
My son was diagnosed with Dysgenesis of the corpus callosum, epilepsy, microcephaly and CVI. He is now 18 months old. He can roll over and sit up for about a minute before falling over. He has been on 4 different anti convulsants and is currently on the ketogenic diet. He has been seizure free for 13 weeks now :) What types of therapies are you doing that are successful? Does anyone else have CVI?
Jennifer - posted on 09/26/2011
Jonathan has Complete ACC, Joubert Syndrome, Multiple Grey Matter Heteratopia and last year was diagnosed with a seizure disorder, he's had one breakthrough seizure since starting his meds, but he's doing good. :)
Michelle - posted on 03/26/2010
I think my daughter has just had her first seizure. We have scheduled an EEG next month to see if we can determine the cause. At this time Im not sure if it is due to the Corpus Callosum or a reaction to her ADHD meds. Im crossing my fingers it was the meds.
Michelle - posted on 03/01/2010
My daughter was orignally told she had no Corpus Collosum also. At 4 1/2 yrs old they did another MRI and the results showed she had 1/3 of her cCorpus Callosum. She is no 6 1/2 and luckily she has not experienced any seizures yet. I know it is always a possibility. I was told the same stories about adult that lived their whole lives without knowing they were missing theirs. My little girl although she is 6 1\2 years old, mentally she is more like a 3-4 yr. old child. She has also been diagnosed with Potocki Shaffer Syndrome which is a partial deletion of chromosome 11. She is delayed globally. She does speak constantly, but as a 3 yr old and very repeatative.
Gemma - posted on 02/28/2010
my little girl has a thin corpus colasom she also has heart conditions and kidney problems. we was told she cud have allsorts wrong, because of the corpus, with her coordination and things. they told use not to expect uch from her she has had surgery on her heart and is delayed developmentlly but not too far behind. she never had the rite amount of nutrian for about the first year as she was sick alot so hasnt grown like she shud and i believe thats why she is behind not because of the brain. we was told by a consultant that people that have had biopsies done in their 90s after death never had the corpus but led perfectly healthy lifes. we was orignally told she didnt have one but wen she was about 6 months another scan reavelled she has a very thin one. hope ur little one is ok gemax
JOHNELL - posted on 02/27/2010
I had German measles in the first trimester of my pregnancy and it caused multiple problems for my son. He had heart surgery at 9 months of age, also he had four different surgeries on his feet and legs. He walks with a walker inside, but has a chair otherwise. I had my thyroid removed in 1977. What is your child's most difficult problem?
Ellen - posted on 02/27/2010
Hello;Thank you for responding. Sara is Developmentally delay also;though she is 19 physical her IQ is 73 and she is childlike in many ways mental age arround 8 to 10; Sara has acceptional social skills and is good nature person;she communicates quite well; but it it took extensive speech theropy to get her where she is. In the beginning it was hard to commnicate with her till we took a sign lanugage classes; then we adapted the sign with gestures until she ws able to communicate properly; a good source is a book by Joseph Garcia--Sign with your Baby(How to communicate with infants before they speak.) with the calberation of Dr. Burton White,it was 1st publishe din 1999 and reprinted in 2003.
One of the issues now that I'm dealing with is a fellow Special Needs boy who is 21 is interested in Sara;but Sara only considers him a friend from school and play mate(as in chidhood sense).I know there are many more challenges ahead. I again thankyou for responding. Take Care: Ellen Baldwin
Stella - posted on 02/26/2010
hi i have a son who was born with agenesis of the corpus callosum, he fortunately for us and him, doesnt have seizures. ben is 22years old now.has an age of a child, who still plays with toys.he has got speech alot repeated he is a happy chap though. would love to hear about your daughter. we live in new zealand and this condition is quite rare here kind regards stella smith
Ellen - posted on 02/21/2010
The origanal diagnosis was either live life as a vegtable or be teachable;luckily Sara is teachable;her learning diablities included delayed motor skills and speech and she also has left side hemi paris(she is partically peralized on the left); Sara had to have extensive rehap; Sara had to use gestures and adapted sign language until she ws 5 yrs old and she also had to use a Apo on her left foot to help walk and correct her cate; Sara @ 19 is walking with out Apo and her speech is normal also she is now on Tegratol and has been seizure free for 3yrs ; there are still some challenges ahead of her but I'm sure we will get through them; family,friends and faith help. Thank you all for responding.