I am a mom

Hi, I am a 17 year old mother of a child with ACC. He turned one month today. We had an MRI and had to see a pediatric neurologist. I didn’t really understand much he said. All I really got from him was that he thought the only problems we would have were maybe some mild developmental delays. But already at one month (and 5 weeks premature, not due til February 16!), he is rolling over! Not just once, but anytime he is one his tummy or back! His reflexes are good, vision so far is awesome, and grip and muscle tone is tremendous for him. The doctor also pointed out that he is soothed by my voice. More so then dad’s. When I talk he looks at me and acts like he listens and understands (even though we know he don’t) but hey, at least it’s good signs right?

Anyway, the reason I’m telling you this is because I want to know more, and be able to understand it. Instead of just telling people, ya he has ACC, no clue what it is and does. I mean I know what it is and what it does by what the doctors have told me, but I want real people with real stories to tell me how good it could be or let me know and get ready for the worst possible synaireo.

Let me know,

-----Original Message-----
From: emily larsen agenesiscc-cpt7777@lists.careplace.com
To: nft1@aol.com
Sent: Wed, 13 Feb 2008 12:55 am
Subject: [agenesiscc] I am a mom.

-----Original Message-----
From: emily larsen agenesiscc-cpt7777@lists.careplace.com
To: nft1@aol.com
Sent: Wed, 13 Feb 2008 12:55 am
Subject: [agenesiscc] I am a mom.

Hi Emily,
Congratulations on your new baby boy!? My son is 3 years old and has complete ACC.? He is smart, cute, entergetic and so normal in many many ways.? His speech is a little hard to understand and he receives special preschool services for this and is making good progress.? His speech sounds so cute and it is not uncommon for many children without ACC to have speech issues.? He does receive OT and PT once a week.? OT (Occupational therapy) is for fine motor skills…building with blocks to make a high tower or shape, cutting with scissors and holding a pencil properly are some things they work on with him there.? PT is for all the large muscle groups.? Jimmy had some trunk strength issues and walked a little late at 16 mos. (many children walk at 12 mos., but it is still considered normal to walk as late as 18 mos. )? He walks fine, runs and jumps and climbs with an energy only a little boy at 3 can have.? Walking the stairs foot over foot is one area he is still trying to master.? As I said though he is making great progress and noone knows he has this diagnosis from looking at him or meeting him.?
My best advice to you is to contact your state’s Early Intervention system where you can be provided with services like OT, PT and other help at no or minimal cost to you.
Good luck to you and that little baby!

-----Original Message-----
From: emily larsen agenesiscc-cpt7777@lists.careplace.com
To: nft1@aol.com
Sent: Wed, 13 Feb 2008 12:55 am
Subject: [agenesiscc] I am a mom.

Thank you! You too. He is very persistant about what he wants and when he wants it. We are getting ready to move to Texas. So I hope he does well. But for now we are on our own without dad for a while. He is in the army and got stationed in Fort Hood, Texas and we can’t go until he gets housing so he hasnt seen much of dad. :frowning:

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Hi Emily,=0D
I am too a mother of a 3 year old boy with ACC, we found out it was missi=
when I was 32 weeks pregnant and that certainly was the shock from hell a=
we were told that the baby would be either severely disabled to perfectly
As frustrating as this was my husband and I took home a perfectly healthy
baby boy.=0D
When he turned 12 months old, I felt that things just weren’t right. (
Mother instincts) He wasn’t all of a sudden responding to us, eating habi=
kicked in, big time sleeping problems after having him sleep beautifully =
the first 12 months, not pointing to things and the list went on.=0D
My husband and I decided that his 3 year old visit with our neurologist h=
to be brought forward and some questions answered.=0D
I walked into his office and sat down and he took one look at him and tol=
us he was Autistic.=0D
After picking ourselves up off the floor we headed off to get this proper=
diagnosed so we could get the best help for him.=0D
He turned 3 in December and is now having regular visits with a speech
therapists, psychologist and other doctors to help in every day situation=
we enrolled him into a early learning intervention center along with a
mainstream kinder so he gets the best out of both schools, he is doing fi=
he is hard work but its all we have to go on and we still don’t know to t=
day whether its linked to the ACC.=0D
I hope this brings you some light on this very rare condition and I am ha=
to return any questions you have for me in the future.=0D
Hope all is well=0D
Kind Regards=0D
Vicki. ( mother of 6.5 yr old boy and 3 yr old boy with ACC ) =0D
-------Original Message-------=0D
From: emily larsen=0D
Date: 13/02/2008 4:55:10 PM=0D
To: cvriley@optusnet.com.au=0D
Subject: [agenesiscc] I am a mom.=0D

Hi Emily! Congratulations on the birth of your baby!

My son was born with complete ACC and mild colpocephaly (not uncommon with acc from what I hear). He also had bleeding on his brain due to a difficult birth and a panicked resident OB. We’re not sure how much the bleeding has affected his development, but we believe his late start had alot to do with the time it took him to heal from it.

He’s doing well. He’ll be three in July and has just started to walk on his own. He is much steadier when he’s wearing his orthodics (braces worn on his feet to support his ankles). He’s not talking yet but he understands much of what we say, he has some signs, and he constantly points to things so we can label them for him. We’ve started a picture communication program with him to take some of the frustration out of communicating…we’re hoping if there’s less pressure he’ll be more likely to attempt to speak. He sees an ophthalmologist for strabismus (usually called a lazy eye, it was not diagnosed until he was about seven months but I had already started taking him in around three months old) but it continues to improve with our functional vision therapy exercises and we’re told we may avoid surgery. Even though his motor skills have been delayed he’s a good problem solver, and a bit of a monkey. He’s also quite a snuggly little guy. :slight_smile:

Right now he gets three therapies, occupational therapy, physical therapy, and speech, through the county early intervention program which comes to our home. I first called them when he was three months old, and our case was opened right away. I would call your EI as soon as possible, they have been wonderful for us.

We have annual visits to the neurologist and endocrinologist, but so far they have just been to check in.

We’re really proud of our little one. We spent lots of time bonding with him and he got lots of stimulation from being worn in the sling, cuddled, and sung to. At our first neurologist visit when he was a few months old, the doctor told us his best advice for how to treat our newborn son was to talk to him, play with him, and provide lots of interaction with us just like we had with our oldest child.

Enjoy your sweet baby :slight_smile:


I am new to the forum and have read what others have posted. Unfortunately, I cannot say that I am having asmuch success as the other moms. I have 2 sons with ACC. They have not been able to figure out what is causing the condition in my children. My oldest son, J.T., is severly handicapped. He is 4 yrs old, eats from a feeding tube, doesn’t sit, walk, crawl, talk, pretty much anything that anyone could say is normal. He is, though, one of the happiest children in the world. Since at this point that is all I can provide for him, I’ll take it. He is in school, gets OT and PT. He needs speech but they just don’t have enough in the area for all the children that need speech.

My 2nd son, Chris, is already developmentally older than J.T. He’s a year old, still not sitting up but eats well and holds his bottle most of the time. My only concern with Chris is his eyesight. I’m glad to hear that your child is doing well and you have already overcome lots of what I’m going through. As long as you have family and friends supporting you, you’ll be able to overcome anything.