I learned back in April that my only daughter has c acc. I have a step son that has many learning disabilities and he has never been diagnosed could he have c acc too?
i would like to no the same thing can anyone help us
Heatherbabymaisey and grandmama,
I am aware that they located the gene for all the people with ACC in Canada recently and so now they are currently doing research to try and see if they can widen it ti the rest of North America. Have either of the NODCC, it is the National Organization of Disorders of the Corpus Callosum. They are having a conference in Dallas in July. This might also be a place for you both to get more information and get involved with current research projects. I am planning on going myself with my parents since I just recently was diagnosed myself. Hope I was of help.
Dori, 36, C-ACC
I think that there is a strong possibility that there is a genetic link for ACC. Both of my twin daughters have C-ACC and my brother has P-ACC.
I have done some research on agenesis of the corpus callosum,and from what i have read a mother had an infection inside of her while the baby is being developed and this infection is undetected and this is what causes some kids to have acc. And as for it being heritary (sp) it can not be passed on meaning that if i were to have kids some day i cant give it to them. it has to do with an infection is all i also read some where the father “may” have the gene but i am not totally sure on that. i need to do more reading.
my granddaughter has p.a.c.c. my husband cousins that we thought had autisum is52 years old we were womding if he had a.c.c. if so cpould my granddaughter inherit this from him.
ACC can be genetic. My son has C-ACC which we learned came from an X linked gene (t/f from me, his mom). The gene mutation that I am a carrier of can only affect my male children. My girls can only be carriers yet that poses the risk of her having a son and passing it along. There are genetic tests avail…mine was done with just a swab of my mouth to see if I was the carrier. My new baby girl is not affected nor is she a carrier thanks to PGD testing.
Can you tell me more about this testing? We’re thinking of having
another baby and I’ve been stalling partly because of the risk of
additional genetic issues. No one else in my family (that I know of)
has ACC, but I am the only baby from my divorced parents. Where can
I find out more? Was this a test done by your OBG or a Genetic
Many many thanks for this posting and additional information.
Jennifer & Ravi, age 2 1/2 C-ACC
On Jun 16, 2007, at 10:41 PM, Hope4my wrote:
Hope4my, I would like to know more about the genetic testing also. I did not realize there was anything conclusive.
In our case, my suspicions about a genetic connection have always been based on my mother’s side of the family. Some of what I’ve heard about my maternal uncle’s childhood as compared to my son seems alittle too similar to be coincidence.
Thanks for the reply. I’ve never been tested, in fact I refused prenatal genetic testing as well. I have been putting off genetic testing because I was under the impression there was no conclusive genetic test for ACC, and that there is usually no real reason found. Is this a recent development? Would I just find a geneticist and ask for a specific test? If so what is that test called?
My son does not have significant medical concerns, however there are a few things I wonder about. He has a small sacral dimple and mild hypospadias, neither of which the ped believes require surgery. But they are on the midline, so it makes me think.
We would like to have another child sometime in the future.
I don’t know…they found a mutation in the L1CAM gene through bloodwork and
then swabbed my mouth to find if it came from an Xlinked source (me). I
would call a geneticist and ask for a consult if I were you. They contacted me
because I was in CHOP with my son for other tests and they suspected ACC so
the geneticists were interested in seeing my son. They found no syndromes,
which is possibly rare, and were interested in following up on him at that
point. Hope this helps!!
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Hubby has ADHD, but as far as we know he has his CC (he had a cat scan in high school). I have OCD, no clue if I have my CC or not. 7 year old has C-ACC, but is very much a combination of me and daddy (high impulsivity, extremely low frustration tolerance, and out-of-this world anxiety is not a good combo!) 3-year-old has autism, but no structural brain differences, at least according to MRI. shrug I’m sure it’s not all a coincidence, but I don’t think it’s as simple as it just being one thing or another. BTW, I was found to have cytomeglovirus (however you spell it) when pregnant with the one with C-ACC, but my titers were in some gray area…couldn’t tell if it was a reinfection or an old infection, and at what point I was actually infected.
Thank you…sorry it took me so long to reply! I appreciate the information. We are having more frequent thoughts of adding to the family so if we are going to look into genetic testing now would be the time.