My newborn has ACC


#1

My son is currently 6 weeks old. He has no other problems within his brain… He is already trying to crawl, sit up, and hold his bottle. He seems so normal. He even knows who I am already… I was wondering if anyone knew the chance that he can live a completely normal life, and not be effected by this at all. Or what are the symptoms of someone who has a subtle condition? None of the doctors I have taken him to can give me any answers. They all just give me general answers and say there isn’t enough information to determine much of anything! They are all driving me nuts… I feel like what am I paying them for?


#2

Hey Tracy,

My son Tanner is 3 1/2, he has ACC, he is developing normal also. I know you have probably heard this before, but children with ACC are all different. I am excited to here that your son is doing so well. I don’t know if you knew this, but the real “Rain man” had ACC, he also is autistic but he is a genius! Maybe our boys will be GENIUSES! We took our son to his neurologist when he was 1 1/2 yrs. he told us Tanner was doing excellent and he didn’t need to go back unless we had any concerns. That was a great sign. We don’t really think about Tanner having ACC very often, because he is so normal. Except with his temper tantrums. I feel he has stronger emotions than other kids. When he is happy, he is hyperactive. When he is sad, it is the end of the world. When he get mad he is mean, hits and yells. Other than that he is a good boy. I read somewhere that children with ACC can have issues with understanding their emotion. Maybe he can learn to deal with them. We just have to try to be patient with him. Potty training is really hard too. Hopefully once he is in school he will not have many learning problems. Unfortunately ACC is always going to be a waiting game. I know how you feel wondering if your little one will live a normal life, but the doc is right, it is too soon to tell. He sounds like he will do just fine. Congradulation on your sweet baby.

Amy


#3

Hi - to add to your hope, my 2.5 yr old daughter has developed normally, and is no longer seen/followed up by any drs. She is toilet trained and has reached all of her milestones on time or early. We’ve been to tons of specialists who all tell us that she is developing normally and her pediatrician thinks that she will continue that way.

Also - I read a journal article the other day about a 23 yr old college student who had an MRI (a minor co-ordination was picked up on a military entrance physical) - and he had ACC. He was a physics major at college. This gave me hope, because there are so few stories of people seemingly unaffected by ACC.

If you want to read it:

Stickles et al. 2002. A 23-year review of communication development in an individual with agensis of the corpus collosum. International Journal of Disability, Development and Education. 49(4). DOI 10.1080/1034912022000028349


#4

Hi there,
I just wanted to give you hope for people with ACC. I only found out at 36, but was unaware of anything being wrong. I found out as a result of some other symptoms I was having which is why they did an MRI. I graduated high school and college and was able to teach elementary school. Please know that there are many different aspects any one person with ACC can have along with ACC. Hope things are going well with your son and just enjoy the new discoveries he makes.


#5

I will be out of the office Monday November 3rd, returning Tuesday November 4th. If you need immediate assistance please contact Rod Rodgers, Director of Field Operations
Thank you,
David Beal


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#6

i am new to the group because my step daughter has a very severe form of acc. she is 6 now, i met her three years ago. her mother is wonderful and we all work well together for my step daughter, aleecias, benefit. she was diagnosed inutero and all the dr.s kept saying they knew nothing and they would just have to wait. aleecia developed very slowly…not crawling or walking until late, she doesnt talk, she is off balance, and she has a lot of trouble with her stregnth because she does not know that she is hurting anyone. she stims all day everyday…spinning, chewing, and rocking on her foot. she is a severe case but everyone with acc is different. there are people that dont know they have it that lead absolutly normal lives. as one of aleecias parents, the biggest problem we have is they symptoms and tending to her needs though she cannot communicate what she wants/needs. i feel we are the only people with a child so severe