Agenesis Corpus Callosum Blog

[acc_angelsaroundtheworld]

Hi Everyone...

I'm Matthew's Mom and he is 15 years old and has complete ACC.

I recently created a new Agenesis Corpus Callosum blog that I thought I would share with you.

I wanted to create a site that could offer positive information, teaching tools, etc and an interactive place where other people could post comments and give their own valuable and insightful information in an effort to help others.

If you are interested and may want to have a look, you can find it at the url below:

http://agenesiscorpuscallosum.blogspot.com/

I welcome and encourage your own insightful information by making comments on the different blog posts and I appreciate your very valuable input.

Have a fantastic day. :)

Sandie *Mom to 15 year old Matthew with ACC in Oregon*

[LIZARD]

Thank you for "waking up" this forum and posting those links. :) I have bookmarked them and will check them out. :)


LIZARD :)

[acc_angelsaroundtheworld]

Hi Lizard,

Thank you for your very nice message.

Thank you also for the opportunity to share more about
Agenesis of the Corpus Callosum (ACC) with others in this forum.

Sandie *Mom to 15 year old Matthew with complete ACC*

[LIZARD]

Hey, Sandie. :)

I'm really surprised that no one else posts over here. I remember that several of us worked hard to have this forum added. Maybe once they see us here, they'll come join in. :)


LIZARD :)

[acc_angelsaroundtheworld]

Hi Lizard,

I'm so glad that you worked so hard to get a forum specifically for Agenesis of the Corpus Callosum. Thank you.

Hopefully it will continue to grow and be a source of help for a lot of people. :)

Sandie *Mom to 15 year old Matthew with complete ACC*

[LIZARD]

Hi Lizard,

I'm so glad that you worked so hard to get a forum specifically for Agenesis of the Corpus Callosum. Thank you.

Hopefully it will continue to grow and be a source of help for a lot of people. :)

Sandie *Mom to 15 year old Matthew with complete ACC*

I hope so, too. My interest in it is a curious one. A close friend has hydrocephalus like me but also has ACC. My son is autistic and has Arnold-Chiari Malformation, but because of his language issues, I wonder if he might have some sort of CC abnormality, too--maybe a slight one that went unnoticed because his Chiari was so prominent.

LIZARD :)

[acc_angelsaroundtheworld]

Lizard,

ACC is sometimes seen with hydrocephalus. In fact, it is often questioned and sometimes even diagnosed before birth because the size of the ventricles are enlarged slightly or sometimes more than slightly due to the corpus callosum being missing and the extra space that is there. Some babies are born with hydrocephalus in addition to ACC but some babies have only ACC and after being born do not have hydrocephalus but only slightly enlarged ventricles. Often times the medical team of doctors will continue to watch the ventricle size to be sure that they are not enlarging. ACC can be diagnosed/suspected before birth.

Kids with ACC can also be diagnosed on the autism spectrum. They may also display autistic-like tendencies.

Agenesis of the Corpus Callosum can also be seen with several other genetic syndromes and chromosome anomalies. One of the genetic syndromes is Arnold-Chiari malformation.

One of the most baffling things about ACC is that it is believed that if ACC is isolated (without any other medical conditions) that the child will have a better chance of being high functioning. There are still kids with isolated ACC who are not high functioning. There are kids with ACC both partial and complete ACC who don't talk or have very few words and there are also kids with ACC who talk very well. Some kids have trouble getting their words out in the right order too. It is very baffling and I have even had one of my child's doctors tell me in the office how baffling ACC is.

Sandie *Mom to 15 year old Matthew with complete ACC*


I hope so, too. My interest in it is a curious one. A close friend has hydrocephalus like me but also has ACC. My son is autistic and has Arnold-Chiari Malformation, but because of his language issues, I wonder if he might have some sort of CC abnormality, too--maybe a slight one that went unnoticed because his Chiari was so prominent.

LIZARD :)

[LIZARD]

His pragmatic ability is the biggest problem. He has difficulty holding appropriate conversations. I know his Chiari has serious bearing on his language issues and may actually be the main problem, rather than autism. He doesn't have so many of the other problems associated with autism--aggression, emotional issues, severe stims, etc. Language and sensory are the biggest issues.


LIZARD :)

[acc_angelsaroundtheworld]

Lizard,

There is no known prognosis for how ACC can or will affect a child diagnosed. There is such a broad range of effects possible when someone is diagnosed with agenesis of the corpus callosum...anywhere from mild learning disabilities to severely mentally and physically challenged.

People with ACC often times struggle with social interaction and socialization. Many parents look for social groups or ways to help their child learn social skills and learn how to be able to use those social skills effectively.

Kathy Schilmoeller, Ph.D. and also the mom of a grown son with ACC who is high functioning wrote the following:

" We are finding that many children with ACC need specific social skills training. They don't read social cues well. Sometimes their facial expressions may present a mismatch with the information they are telling, for example, smiling when telling that a classmate's dog has died. As mentioned earlier, speech-language pathologists can help with teaching children the pragmatics of language and verbal social interaction."

Quote comes from her document located below:
https://www.nodcc.org/pdfs/Conference_Handouts/educational_suggestions_for_children_with_acc.pdf

Travis Research Institute has been studying the corpus callosum since 1992. They did a study on people with isolated ACC who have a normal IQ level and one of the studies looked at psychosocial abilities:

http://www.travisinstitute.org/neuroscience/agenesis.htm

I believe that it is very difficult to try to determine the exact medical cause and reason for the language issue when you have multiple medical diagnoses and especially when ACC is one of those multiple diagnoses.

Sandie *Mom to 15 year old Matthew with complete ACC*


His pragmatic ability is the biggest problem. He has difficulty holding appropriate conversations. I know his Chiari has serious bearing on his language issues and may actually be the main problem, rather than autism. He doesn't have so many of the other problems associated with autism--aggression, emotional issues, severe stims, etc. Language and sensory are the biggest issues.


LIZARD :)