Hello!

[Becky1219]

My son is 2 years old with hypoplasia of the corpus callosum along with many other congenital anomalies of the brain/spine and EA/TEF. Glad to find support here. We just learned of the brain and spine anomalies a few months ago and I'm trying to sort everything out. While Jack is behind developmentally in several areas, he is doing well overall. Do most others with any form of ACC have other congenital issues as well? If so, how do you figure out what issue is causing what symptom? I'm also trying to figure out the connection between his hypoplasia of the CC, chiari malformation 1, hydrocephalus, metopic synostosis, tethered spinal cord, syrinx, and all their related issues, in other words since some of these can be the cause of the others what came first. Thanks for any info. I'm considering attending the conference in August, but just can't decide.

[acc_angelsaroundtheworld]

Hi Becky,

I am the mom of a child with ACC. My son is 15 years old and he is completely missing his corpus callosum.

Hypoplasia of the corpus callosum is also referred to as a thin corpus callosum. Thin cc means the corpus callosum has all the parts there but it is very thin.

Below is a website with MRI pictures of the different types of corpus callosum disorders for you to view:

http://www.abc.net.au/rn/allinthemind/docs/ACC_Brain_images_courtesy_Dr_Elliott_Sherr.pdf

I think you may have a difficult time trying to pinpoint exactly what diagnosis is causing what symptom.

A diagnosis of aenesis of the corpus callosum or a corpus callosum disorder has a very broad range of how it might affect someone. They can have mild learning disabilities or be severely mentally and physically challenged or anywhere in between. There is no way to predict how ACC may affect a person.

ACC can either be isolated (meaning just the corpus callosum is missing or partially missing or hypoplasia) or it can be associated with other medical conditions that are sometimes seen with ACC.

When a person is diagnosed with ACC or a corpus callosum disorder they are at risk for having seizures, midline defects and problems, optic nerve problems and medical conditions involving their eyes, genetic syndromes, chromosome anomalies and metabolic disorders.

Not all people who have ACC or a corpus callosum disorder have other congenital conditions. Many people who have isolated ACC are high functioning. It is believed that you have a greater chance of being high functioning if the ACC or corpus callosum disorder is isolated (without any other medical conditions involved).

There are several parents on another support group I belong to who have a child with ACC and arnold chiari malformation I. That is through the ACC-Listserv (ACC Network) e-mail group.

Some people who have ACC also have hydrocephalus.

Some people who have ACC also have tethered cord.

I honestly think (from what I have learned) that you will not at this time be able to figure out what came first, what is causing each symptom or what caused all of the medical conditions that your son has.

The Corpus Callosum Conference is a great place to learn more about agenesis of the corpus callosum and other corpus callosum disorders. It will allow you to meet so many other parents who have a child with a corpus callosum disorder and adults who have it as well. I attended a Conference several years ago and had a very eye-opening experience to the huge range of how it can affect people. I enjoyed the Conference very much.

The DCC Conference Schedule can be found at the link below: (August 14-16, 2009)

http://www.nodcc2.org/nodcc2/index.php?option=com_content&task=view&id=102&Itemid=202

There is research being done right now by Elliott H. Sherr, M.D. He is a neurologist in San Francisco, California. Many parents who have a child with ACC have participated in the Research and some have also taken their child to be seen by Dr. Sherr.

It is my understanding that Dr. Sherr will be at the upcoming Conference in August.

More information about Dr. Sherr's Research and how to become involved in the research project is at the link below:

http://neurology.ucsf.edu/brain/callosum/callosum.htm

I am so glad that your little boy, Jack, is doing well developmentally overall. :)

I hope that you will decide what is right for your family with respect to attending the Conference.

If you have any questions or if I can help in any way please let me know.

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

ACC-Angels Around the World:
http://scenicbeauty.tripod.com/AngelsAroundTheWorld.html

ACC Blog:
http://agenesiscorpuscallosum.blogspot.com/

My son is 2 years old with hypoplasia of the corpus callosum along with many other congenital anomalies of the brain/spine and EA/TEF. Glad to find support here. We just learned of the brain and spine anomalies a few months ago and I'm trying to sort everything out. While Jack is behind developmentally in several areas, he is doing well overall. Do most others with any form of ACC have other congenital issues as well? If so, how do you figure out what issue is causing what symptom? I'm also trying to figure out the connection between his hypoplasia of the CC, chiari malformation 1, hydrocephalus, metopic synostosis, tethered spinal cord, syrinx, and all their related issues, in other words since some of these can be the cause of the others what came first. Thanks for any info. I'm considering attending the conference in August, but just can't decide.

[BonBon]

Hi,
My daughter (16) was born with absence of the Septum Pellucidium. Is this the same thing. We were told that most children who are born with this have issues with eyesight(blindness) and are developmenatally challenged. She has some vision problems but is an Honor student. The one thing she does have is a headache every day due to the enlarged ventricles in her brain , from spinal fluid. Her working DX is PTC(psuedotumor Celebri) and she has tried all kinds of meds for headaches. She was also born with a congenital kidney problem , UPJ obstruction and this was not diagnosed til she was almost 11 so she suffers from hydronephorosis(sp) and kidney stones. She had a pyloplasty surgery at 11 along with surgery for a large ovarian "mass" which turned out to be benign. Fast dorward to 4-5 yrs later and she is still having nausea everyday along with abdominal pain. Her drs ran all kinds of blood tests and her VMA was elevated, possible pheochromacytoma? Or carcinoid tumors/syndrome as she is having facial flushing, diarrea , along with pain and nausea, high pulse and low BP.

It is great that your son is thriving like my daughter. It's the unseen complications that we didn't know about, kidney involvement and who knows what else? I think if son starts losing weight, has nausea then you should be proactive and get these symptoms investigated. As soon as my daughter started with the flushing I knew something else was going on. What I didn't even think about, carcinoid was not something I was famaliar with.

Good luck to you a nd your son,
Bonnie

[acc_angelsaroundtheworld]

Hi Bonnie,

You asked if Absence of the Septum Pellicidum is the same thing as Agenesis of the Corpus Callosum (ACC). No, it is NOT the same. They are two separate diagnoses.

SOME kids who have Agenesis of the Corpus Callosum or partial ACC can also have absence of the septum pellucidum.

The septum pellucidum sits directly underneath the corpus callosum.

Below is a picture of the brain so you can view where the septum pellicidum is in relation to the corpus callosum:

http://en.wikipedia.org/wiki/File:Gray720.png

It is my understanding from talking with other parents who have a child with absence of the septum pellicidum that yes their eyes do need to be checked thoroughly by an ophthalmologist because they are at risk for having optic nerve hypoplasia and or septo-optic dysplasia and vision problems. They should also be seen by an endocrinologist.

I would refer you on to Focus Families where you can explore more:

http://www.focusfamilies.org/focus/usdefault.asp

I hope that your daughter will get better soon and that her doctors will discover what is causing her to feel so ill so they are able to treat her. :) My prayers are with you and your daughter.

Again, I want to say that:

Agenesis of the Corpus Callosum is NOT the same thing as absence of the septum pellucidum.

Sandie






Hi,
My daughter (16) was born with absence of the Septum Pellucidium. Is this the same thing. We were told that most children who are born with this have issues with eyesight(blindness) and are developmenatally challenged. She has some vision problems but is an Honor student. The one thing she does have is a headache every day due to the enlarged ventricles in her brain , from spinal fluid. Her working DX is PTC(psuedotumor Celebri) and she has tried all kinds of meds for headaches. She was also born with a congenital kidney problem , UPJ obstruction and this was not diagnosed til she was almost 11 so she suffers from hydronephorosis(sp) and kidney stones. She had a pyloplasty surgery at 11 along with surgery for a large ovarian "mass" which turned out to be benign. Fast dorward to 4-5 yrs later and she is still having nausea everyday along with abdominal pain. Her drs ran all kinds of blood tests and her VMA was elevated, possible pheochromacytoma? Or carcinoid tumors/syndrome as she is having facial flushing, diarrea , along with pain and nausea, high pulse and low BP.

It is great that your son is thriving like my daughter. It's the unseen complications that we didn't know about, kidney involvement and who knows what else? I think if son starts losing weight, has nausea then you should be proactive and get these symptoms investigated. As soon as my daughter started with the flushing I knew something else was going on. What I didn't even think about, carcinoid was not something I was famaliar with.

Good luck to you a nd your son,
Bonnie

[BonBon]

Thanks Sandie,

my daughter has been ill for so long that someone suggested that she see a neurosurgeon instead of neurology dr. She doesn't have a shunt (yet) and even some of her drs want to know why?

She just had a thourogh exam as she also has numerous cafe au laits and has been screened for NF. She has more than the required 6 but this is the only NF criteria she meets so far.
Bonnie