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Post by bigfella on Nov 10, 2009 18:39:22 GMT -5
My girlfriend went for her 20 week scan in Liverpool, UK. At this scan she was told that our baby boy has ACC with Ventriculomegaly, One of the ventricles of the brain measured at 10.7mm and the other around 9.2mm. Since then we have seen a specalist who has told us the ventriculomegaly has not got any worse, one ventr...icle is now at 9.8mm and the other around 10.4mm. So this was good news as it makes us think this is isolated and wont get any worse. However, the consultant also advised us if the condition stayed exactly as it is at this moment in time then the baby would have a 80% chance of leading a 'normal' life, and the other 20% would mean a small learning impediment. I was just wondering if anyone has a simular situation or can shed any light for us? I would be very greatful. My girlfiend is currently 24weeks and 3 days, with a little boy :-). Also she has had an amniocentesis and all the results for that have come back clear. Many thanks!!!
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Post by ehart on Nov 11, 2009 11:04:36 GMT -5
I think what you will find is that there is a wide range of symptoms and different levels of severity with ACC. I found the NODCC (national organization of disorders of the corpus collosum) to be helpful. They operate out of University of Maine. Unfortunately, a lot of it is "wait and see". I have a 3 yr old boy, Logan, that has Partial ACC (P-ACC). He is usually 3-7 months behind his peers developmently. He is also the sweetest little boy and works very hard at his therapies. That's right, therapy, b/c early intervention therapies are great and have helped Logan from getting further behind his peers. The therapists have helped teach me how to teach him, b/c he learns differently from my other child. He does speech, occupational therapy, and physical therapy. We are also finishing up a behavioral therapy course b/c Logan was having a hard time understanding cause and effect (ex. if you throw a bowl at the dog, the bowl breaks and you get in trouble).
This is just a glimpse of one child with PACC, like I said, each child is very different. My advice is research early intervention in your area, get info from different groups (NODCC, ACCA, even Facebook has some groups), but most important, try and enjoy the rest of the pregnancy, b/c you will soon have a wonderful baby boy to love on! Good Luck, erin
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Post by bigfella on Nov 11, 2009 11:25:08 GMT -5
Thanks alot that really helps! Believe it or not the name we have picked for our little boy is Logan! Im just wondering is ACC affects everyone who has it or is the colsultant right that our little boy only has 20% of having 'learning' difficulties??
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Post by ehart on Nov 11, 2009 20:32:11 GMT -5
I don't know what the percentage is, but I have heard of a few people finding out they have it when they are older, by accident. One man was in a wreck, had a C/T scan and they said, "Did you know you have ACC?" He researched it and thought, "Well, that explains some of the difficulties I had in school". So there may be cases of people that have it and don't know, or are not affected at all. I think a lot of the cases have some degree of developmental delay. There is such a wide range of severity, that some times the hardest thing is playing the wait and see game. There are good days, and bad and there are seasons where my Logan is doing great, and other times when he is falling behind. I still do not know what the future will bring for my son, or what trials he will face as he grows up. I pray for patience and peace for where things are at on a daily basis. And I love the name Logan, it's a good pick. Best wishes- erin
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Post by Lynnea on Nov 13, 2009 17:30:26 GMT -5
Hi! I'm Lynnea, I'm the admin on this board. I'm not a parent, but I'm an adult ACCer. I found out when I was 20 that I had ACC and like the story that was shared my response was "well that explains a lot" many Adult ACCers have that reaction. Usually you will here that there are minor learning difficulties in those that find out as adults. As already stated, each ACCer is different some can seem completely as though they dont have ACC where as others it's more noticable. Either way therapies are wonderful. There have been studies that music therapy helps the brain find new neural pathways, and as a musician I can say that I firmly believe that. As an adult ACCer I'm also in my last year at my University. I do have learning troubles but as long as I try hard, and know myself and my study habits and techniques and surround myself with people that want to help me and are patient with me I'm okay. Also my mother is there to help me as much as she can. So these are just some positive things that I can share with you. Even with learning troubles an ACCer can do it! It's all about being positive and having positive people surround you! Which is exactly what this board is for, for both ACCers and the parents and anyone else who wants to be involved in the lives of ACCers I'm so sorry if I've not sent you welcome messages to the board, I want to say welcome and I hope this board is helpful to you! Blessings!
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Post by lauras on Dec 6, 2009 9:56:37 GMT -5
Yeah pretty mcuh what everyone else says its a "wait and see" game. But look into early interventions, they really help.
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