Comments on: What Is Agenesis of the Corpus Callosum?

By: Jennifer Diamanti

Jennifer Diamanti — Tue, 24 Jan 2012 23:37:42 +0000

My son is 5 years old and was diagnosed with complete AgCC at birth. He was a big baby so my OB wanted to get a late term ultrasound, which showed he had some slightly enlarge ventricles in the brain. She then told us just to be safe we should have an ultrasound done on his head after he is born. The day after he was born while we were still in the hospital they did the ultrasound and reported back that the ventricles were fine but that he was missing his Corpus Callosum. The pediatrician told us that this could mean he may be delayed or he could have seizures that would make him a vegetable. We were devastated, I was not prepared for that information, thankfully while still in the hospital they did an optical test to rule out the most severe syndrome and the head of pediatric Neurology came and examined him as an initial assessment. At 2mo. old he had an MRI to determine if there were any other brain abnormalities. It showed that the AgCC was isolated and nothing else was wrong, we were so relieved to know that he would be ok, health wise. Then life went back to normal, he sees his neurologist every 6mo. which is just a check up of sorts. Around 18mo. old we noticed he was not keeping up developmentally with speech, so his neurologist suggested we have him in a developmental program (Birth -3 program). Over the next couple of years it was really difficult. I would watch other children at the park who were the same age being able to communicate with their moms and all my son could do was sqwack and babble. Slowly he began to find his language. Then I decided it was time for some more regular social interaction. I had some friends recommend coop preschool so we tried it. It was a disaster. The teachers saw him as a problem child because he could not follow instructions and the other parents would not talk to me. One of the assistant teachers brought to my attention that she was concerned that he had autism because he liked to group things and do specific tasks over and over again. I was confused despite seeing a neurologist and doing speech therapy we were not being given the proper tools or information to understand our son’s development. Then someone at the Northwest Center where he was receiving his therapy suggested developmental preschool through the public school system. This was a God send. He loves school and is doing really well. Very utilitarian functions such as potty training, dressing etc. are difficult and have been a battle but we finally figured out that he learns everything through repetition. That is why he likes to do the same thing over and over. Social skills are a struggle as well he has many of the same difficulties that others have posted here and that is the main focus for his teachers. Now we are facing Kindergarten next year and I am terrified. He has had amazing teachers up until this point but I have just realized that I am going to be his best advocate, as his mother I have to be proactive about fighting for him and making sure that he is not misunderstood. I am starting to get plugged in to communities suck as NODCC, and look forward to learning more and more. My son is amazing he is so intelligent and sees the world in such a unique way. I learn so much from him everyday. The biggest lesson that I am still learning is Patience.

By: Juline

Juline — Mon, 23 Jan 2012 22:08:18 +0000

My son will turn 29 this year. He was diagnosed with ACC when he was 5 years old. With the help if IEP’s he completed 12 years of school and graduated High School with C’s and D’s. Ryan exibited all the classic ACC learning difficulties through childhood and adolessence. He got married at age 21 (I was apposed as he was so immature I felt he wasn’t able to accept the responsibilities of Husband and in the future fatherhood.) I met with his fiance’s parents and tried to teach them about ACC and the challenges Ryan had because of it. Needless to say, the wedding went on and lasted only 1 1/2 years. Thankfully they had no children. Ryan divorced because he wanted to have “fun with his friends” instead of being responsible. Money issues are huge with Ryan. Money is the great equalizer for him. If he has it and is spending it he feels “normal”. He works and is a good worker, but he has a hard time keeping a job because staying on task is a challenge. He needs someone keeping him focused. He loves to visit with customers and believes he is the most helpful of any employees, and is shocked when he is let go. He lives back at home now as his income is too eratic to pay steady rent. He also has accummulated a lot of debts. We have a Power of Attorney and are helping him stick to a budget and pay off his debts. Because math is difficult for him, a budget is like a foreign concept to him. I am constantly teaching and re-teaching the same principles over and over again. Girls are our biggest problem with Ryan. He likes facebook and talks to girls on line. If they are polite to him, He thinks they LOVE him and he immediately LOVES them. He wants to spend every moment when he is not at work, with them or talking or texting. He is very affectionate. Wants to hold hands, put his arm around them, stand way too close when they are around him, hug all the time. He moves way too fast and it scares them off. When they withdraw from him, he can’t pick up on the “cues” and wants to “fix it” instead of just backing off. Consequently, he has a lot of enemies. We are at a loss as to how to help him. We continually try to teach appropriate social behavior, but he doesn’t see what he is doing as inappropriate. Is this behavior typical? How do we help him without hurting his self-esteem? Any information as to how to handle adult ACC patients would be very much appreicated.

By: jody griggs

jody griggs — Sun, 22 Jan 2012 20:36:14 +0000

By: Kelly

Kelly — Tue, 10 Jan 2012 17:36:26 +0000

I have ACC. The one thing I’ve noticed in my life is that transitioning for childhood to adulthood is and has been extremely difficult. I was given assistance in school (IEP) and went off the college where I learned how to use my IEP skills. However, in the real world, there is no teacher or instructor holding your hand. I’ve been told at every job (by my boss) that I am too slow to keep up with their skill level or expectations.

By: Elvira

Elvira — Sun, 25 Dec 2011 02:57:51 +0000

We just found out our 3 week old baby has a partially thin posterior and anterior Corpus Calluses. We live in Central America, and don’t have access to Seminars, Therapists etc. Can anybody give us some advice on finding information on the internet? How to diagnose the exact problems our child will have and what exercises I could begin with?

By: Jaime

Jaime — Sat, 10 Dec 2011 05:06:00 +0000

I’m 24 weeks pregnant was diagnosed that my daughter has complete acc and trisomy 13 has anyone had this diagnosed. This is a great site it gives u hope and more understanding.

By: Sue

Sue — Sat, 26 Nov 2011 03:08:50 +0000

I am 19.5 weeks pregnant and have just found out my baby has Agcc- I appreciate all of the comments and stories on this website and others- I am wondering how likely it is that other children we may have in the future will have Agcc, among many other things of course…

By: Sierra

Sierra — Fri, 18 Nov 2011 07:59:10 +0000

Thanks for this article! I have a brother and 2 sisters with agcc I was told recently after living 20 year and believing I did not have it that I could have agcc and not even be aware of it :/

By: Dawn

Dawn — Fri, 04 Nov 2011 03:20:27 +0000

Well we saw another Doctor today and she explained his MRI alot better than the other DR. Anyway he has thin white matter but she said that ACC was not noted so it is not a diagnosis? She mentioned that he possibly has cerebral palsy due to his low muscle tone and stiffness of extremeties.

By: Dawn

Dawn — Mon, 31 Oct 2011 02:49:16 +0000

My son is 17 months and he has had two surgeries for craniosynostosis. After an MRI we were told he has thin white matter. By reading here it seems he has AGCC but what kind? He has corpus collasum but it is thin all over. The doctors have only told us that it is causing his delays and will continue to delay him for life. I dont know what to expect. Thank you and if anyone else has similar experiences please let me know.