Here are some suggested organisations that offer expert advice on SN.
agenesis of the corpus callosum(8 Posts)
my daughter is nearly five months old and was diagnosed with agenesis of the corpus callosum when born. has anyone else child got the same or any advice or information would help.
I used to know a lot about this condition as the ante-natal consultant thought that DS2 might have this when he was scanned at 20 weeks.
He was then given an MRI at a week old, and was found not to have it at all. However, since then I have forgotten most of the information I had googled .
Have you managed to look at any websites? I think there is one called Corpal which supports children and the parents of children with ACC or Aircardi syndrome.
Also, I am sure there is a MNetter whose daughter had the condition but unfortuntely I cannot remember her name. Maybe if you do a search on here you may find some informative threads from her .
HI jayney, i've no experience of the condition but just wanted to hello & give it a bump for you.
Hi jayney88 - my DD1 has Aicardi Syndrome which means she has ACC. Because she has syndromatic ACC she is likely to be more severe than your DD, but I think it's one of those things where children with the same condition can vary enormously.
I would think joining Corpal would be a good starting point. I'm also more than happy to answer any questions. I don't come on MN much anymore but happened to just spot this.
ACC network maintains an electronic discussion group focused on disorders of the corpus callosum you can subscribe to. You'll find a lot of useful and helpful information exhanged between parents of children with ACC as well as ACC adults.
Our son, age 12, was GREATLY helped by sensory stimulation (find an O/T who has specialized in just DSI, or learn it yourself 0 I have been meaning to write a book on it for 10 years).
I do have a website, but it has generated no income for my writing abilities. However, I did publish one article in SI Focus magazine. If you go to the "Articles" section, or it is on the first page, (I forget and I am dead tired), you can read it, and if you have any questions, contact me. (oh, real name, Jennifer Cummins)
It is called, Tapping Into the Senses. Or, you can Google my name or the article. my website is omnibuswriting.com. I am NOT selling anything! Honest. I just want everyone to know that ACC is not a disability death sentence. You need, at this age, to start being an active teacher, as the brain is the most plastitic through age 6 or 7.
P.S. Also look up every term on his MRI report. Contact Early Intervention services for your state, as well as WIC for food vouchers. the Hospital should help with social services. This is no time to be shy. You need to learn everything you can about the condition, and ask for reports, file them in a file under each doctor's name. You may want to create a three ring binder you can carry with you to each dr. visit. ACC, unfortunately, sometimes occurs with another rare disability, so be prepared for that.
Contact ACC Network, or the NODCC, which merged with the Network, and have them send a directory of state-by-state members you can contact (parents of ACC children), as well as all their other information. Experts include Warren Brown, Lynne Paul, and Kim and Fran Peek.
Kim was the main inspiration for the movie, "The Rain Man." Don't let that discourage you; his cerebellem is split into 8 separate parts as well, so it is NOT the absensse of the corpus callosum that is responsible for his level of "genius". I heard that reported on a NOVA special on the brain!
Hi jayney88 - my dd has partial agenesis of the corpus callosum, which in her case seems to form part of an undiagnosed syndrome (she is affected in lots of different ways). I think as HITC says ACC or p-ACC is a massive spectrum - there are some adults who could have this brain abnormality and be completely unaware that they have it as it only very mildly affects them, whereas my dd is at the more severe end of that spectrum.
There is a yahoo group which I belong to which has a strong membership - I think you should be able to find it by googling. Like HITC I don't use this board very much any more, but am happy to help if I can.
Hi HITC <waves> - have namechanged but hopefully you know who I am .
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