Special Needs
Corpus Callosum Disorders?
Hi, I am new to this board, I have posted on other bump boards and didn't even know this existed until I was doing a google search and a post came up in the results.
My 2 year old was recently diagnosed with Hypogensis of the Corpus Callosum. She has developmental delays and sees a PT, ST and SI through EI. Luckily she is now walking and has started to say some words. The neurologist we saw didn't give us much info and just told us to get generic testing and go from there (which we should have the results back by next week I think).
From what I can tell, all cases are different, but has anyone gone through this that can give me some real life info or direct me to some places where I can get more info? Thanks!
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Re: Corpus Callosum Disorders?
Nate has HCC and there a a few others on this board with HCC and ACC. Nate's HCC was caused by one of three microdeletions on his chromosome #1 but there are a lot of genetic conditions that DCC is associated with. The good thing about genetic testing si that you can learn if this is something that could happen again(in most cases no) and you can also learn if you need to watch out for other issues.
The important thing to remember is that every child will present differently. Nate seesm to be doing well and is on track for most developmental milestones except gross motor. He just started to do an upright crawl this weekend. He mostly scoots around on his butt. He also has hearing loss which is associated with another of his deletions.
Here are some links for you:
The National Org. for Disorders of the Corpus Callosum:
https://www.nodcc.org/
This page has a lot of links to other websites and blogs:
https://scenicbeauty.tripod.com/AngelsAroundTheWorld.html
There is a helpful blog written by a mom of a 16 yr old you can go to.
https://agenesiscorpuscallosum.blogspot.com/
I also joined the email List Serve hosted by the Univ. of Maine which bascially works like a yahoo group. There are also a few facebook groups run by either parents or adult ACC'ers. You also have to remember that a lot of the parents active in the list serves and blogs that you will find info on the internet are those with children who are more affected. I have yet to find a blog that is titled "My kid has DCC and is doing Wonderfully!" I am sure there are children out there who fit that discription as well. Feel free to PM me or ask questions in this forum where all of us can help you out. Welcome!
We have friends whose daughter has ACC, which was found on their 20-wk US. Their daughter is 3, has done all kinds of therapies, and seems to be functioning on a typical level. She is adorable, loving, social, delightful, I could go on.
I don't think any outsider would ever guess she had a brain disorder.
Just wanted to emphasize PP's point that there are kids out there with ACC who are doing great.
There is also a yahoo group that's pretty helpful.
my son (16 mos.) has hcc and a hypoplastic hippocampal area. he does have some other issues (hearing loss, congenital microcephaly,
left facial nerve paralysis, probably genetic syndrome).
he's doing well. he's walking, signing (about 7 or 8 signs), and says mama, wawa, mmm for cow, vroom for car, and tries to say some other words.