Anyone have a child with ACC??

mrs.beauprez

ACC-agenesis of the corpus collusam

My DS is 3 now but when I was around 30 wk preg we found out he had ACC

At that time they couldn't tell us what kind of life to expect for him bc it's such a varied outcome.

Flash forward to now and my DS is doing just great. He has no delays of any sort and you would never know he was missing part of his brain.

Im not gonna lie it took many years of pt and OT to get him here but it worked!  I was just curious if anyone out there had a child with ACC. 

Mitsubishi been a long time since I've been on the boards and I just wanted to check in from time to time.  

S-Tuna

My son (just turned 1) has ACC. So far he is in PT and gets OT once a month. He was also diagnosed with holoprosencephaly and was born with an Encephalocele that has been removed. From what we understand, it could be years before we really know how much his abnormalities will effect his development. Thank you for posting. It's encouraging to see how well your son is doing! He is really cute, too.

Assembly_Reqd

**waves**

Good to see you again Mrs. B! Nate has HCC and mild-moderate hearing loss.

We really have not had any new ACC kids since I joined a couple of years ago. there was one lady who asked about it because she got a ACC dx when she was 20 weeks pregnant. We never heard from her again. I hope she decided to continue the pregnancy

I am so glad to hear your little guy is doing well! Are you a friend on the Facebook ACC group? I post there sometimes and also post a bit more in the HCC Facebook group. A mom I met through there is now in Baltimore getting therapy for her 3.5 year old son.

 

Assembly_Reqd

S-Tuna:

My son (just turned 1) has ACC. So far he is in PT and gets OT once a month. He was also diagnosed with holoprosencephaly and was born with an Encephalocele that has been removed. From what we understand, it could be years before we really know how much his abnormalities will effect his development. Thank you for posting. It's encouraging to see how well your son is doing! He is really cute, too.

well color me incorrect about other acc-ers!

S-Tuna

Assembly_Reqd:

S-Tuna:

My son (just turned 1) has ACC. So far he is in PT and gets OT once a month. He was also diagnosed with holoprosencephaly and was born with an Encephalocele that has been removed. From what we understand, it could be years before we really know how much his abnormalities will effect his development. Thank you for posting. It's encouraging to see how well your son is doing! He is really cute, too.

well color me incorrect about other acc-ers!

I just re-introduced myself, lol. How do I find the ACC facebook group?

mrs.beauprez

Stupid IPhone spell check Mitsubishi. Wtf?? Lol. I'm glad this post comes as an encouragement to you STuna!! The only delays my son did have was he didn't crawl until 18 mo and didn't walk until 21 mo. He's just now taking interest in potty training and he turned 3 in June. He's always been advanced in speech and cognitive thinking. He's very safe and keeps to himself around doughboys his age. He's a bit reserved around big groups too. But we think that is just who he is vs the ACC. 

Its nice to catchup with everyone again. It's a small ACC population out there. I'm not sure I'm on the ACC FB pg or not but I'll check it out - thanks!  

The angels around the world ACC website it what I stay connected to the most.

 

mrs.beauprez

Would u mind letting us know the ACC fb pg?!

Assembly_Reqd

S-Tuna:

How do I find the ACC facebook group?

try this link

https://www.facebook.com/groups/182201855144831/

 It is a closed group, i.e. all your 'friends' and 'friends of friends' will not see any posts you make there. Nor do the posts turn up in your timeline. I would message the moderator and give a little info on DS and you should be good to go. i don't remember having to wait long at all to be 'accepted'.

mrs.beauprez

Would u mind letting us know the ACC fb pg?!

Justinlove

Hey girl

Justinlove

Hey...just noticed your siggy!  Congrats!

mrs.beauprez

Hi justinlove!!  How's miss LA. I love seeing her updated pics on FB. She's getting so big and grown up looking!  

Yes thank you cautiously and quietly expecting again.

Glad to see u here friend!! 

mrs.beauprez

Oh my justinlove congrats to u too honey!!

Assembly_Reqd

I thought of another one, 'mommy06', but I think she is either HCC or DCC.