Dave,
Just wondering where in Ohio your uncle works? We go to Cincinnati Childrens.
Thanks,
Lisa
LMV, I believe he works at Dayton Childrens Hospital. But he is taking a position at another hospital in the next couple of weeks. I will let you know where when I talk to him next.
Dave,
We go to Dayton Childrens for some things for Ella but her neurologist is in Cincinnati. Dayton is a good hospital but Cincinnati has such a good reputation for so much so we go there more even though we live closer to Dayton.
What is his name? What a small world huh??
thanks!
Welcome
I am disabled muscular atrophy does not move quite a quadrilateral and need a private car to move by wheelchair automobile Freimut
I do not like to be a non grata and not loved
Does not consider the sadness and pain
I hope you give me the assistance and wheelchair automobile Freimut
Or material assistance for the purchase of this Holy treatment
I love you all
Welcome I am disabled muscular atrophy does not move quite a quadrilateral and need a private car to move by wheelchair automobile Freimut I do not like to be a non grata and not loved Does not consider the sadness and pain I hope you give me the assistance and wheelchair automobile Freimut Or material assistance for the purchase of this Holy treatment I love you all
Hi my name is Corie and its a week today since we were told that our daughter Molly has ACC and Dandy-Walker Variant. This is all very new so I was very happy to find this group. Just a little on Miss Molly
She is 20 months and has OT twice a week / PT twice a week and ET twice a week. She test between a 9-10 month old. But she is moving foward no real set backs yet. I look forward to getting to know others living with this as well
Hi Nic,
I think this might be my first post here but lurk occasionally. My 4 year old son, Jonah, has ACC. He has been and still is considered a normal little boy. We’ve had all of the tests and monitoring done and continue to do so and so far we have been genuinally blessed. This is not to say that I will ever stop worrying or learning about this. And Jonah did have two other mid-line issues at birth. Both were easily corrected with surgeries. (One was a cranial surgery and the other was a minor correction to his genital area). These were done before he was six months old. I remember when he was diagnosed at six weeks and being devestated for so long because there was no positive news out there. But even now, four years later, there are so many more people telling similar stories to ours. Good luck and God Bless.
Sincerely,
Christie Dannewitz
mom to Drew Olivia (10)
and Jonah Beckett (4) ACC
Hi everyone,
I just found out last night that my sister’s unborn son was diagnosed with ACC. She’s 33 weeks along in her pregnancy. I’m looking for info on what to expect and what I can do to best support and help her for these last few weeks. They did further testing and believe it’s isolated and that there are no other issues (at this time). I’d love to hear personal experiences and any advice anyone else…hopefully I’ll get her to come join the group - but I think she’s still dealing with the blow of all this and isn’t really ready yet.
Thanks,
Nicole
I will be out of the office Friday August 1st returning Monday August 4th.
Thank you,
David Beal
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Hi Christie,
If you don’t mind - I’d love to e-mail you personally to ask some questions. My e-mail is nic0808@yahoo.com if you don’t mind and want to give me your address.
Thanks,
Nicole
Hi everyone. My name is Tracy, and my fiance and I found out two weeks ago that our son has complete ACC… At 20 weeks pregnant, the doctor told us, it may be down syndrome, the nerves just weren’t firing as rapidly as he would like… Then I went back at 34 weeks, and he tells me he can’t get a good enough look, and we would have to have an US done after he was born… That ultrasound, was inconclusive… so we had an MRI done on the 28th of July… I was devestated when I found out. I love him so much, and I don’t want him to suffer in any way. I am trying to stay positive about it, that he will be perfectly normal… as well as prepare myself for the worst. It isn’t easy because every doctor and all of the info on the web are so negative. My son is now 6 weeks old… he is already trying to hold his own bottle… sleeping almost through a whole night (some nights 6 hours… others 7 or 8)… he can actually crawl (it is only a couple of steps because his muscles aren’t stong enough to keep his head up that long)… he rolls over… from his back to his belly… knows how to take the pacifier out of his mouth with his hand… and if he is laying down and his pacifier falls out, he will get on his belly and try to push it back in his mouth… most of the times he gets it in too! (Sounds like great motor and problem skills to me)… I know all newborns have their own signs… but if my son is still hungry after a feeding, he will simply put his hand to his mouth 3 times (every time)… If he wants his pacifier he sticks his tongue out just a little bit a whole bunch of times. He even does kisses already! If I say “kisses” he will pucker his lips for me. He seems even more advanced than a child without ACC, from what I read. This is my first child, and I am looking to meet other mothers of children with ACC, so that they may give me hope, and keep me informed. I lay in bed at night and cry sometimes because I feel like a failure to him, and I messed up his precious life just by being his mother… (I always calm myself down before it is time for him to wake up though… I don’t want him to sense anything is wrong)… That is the other thing. I have been doing everything on demand with him… and he made his own schedule… a great one at that… he is awake about 7 or 8 hours a day (mostly if not all, during the day) … he eats at about the same time everyday, wakes up almost like clock work, even dity’s his diaper routinely. I think he is going to be okay… I just get so upset sometimes, I am hoping that the support will help me through coping with this diagnosis, and any rough times (as I am sure will happen) that I may encounter. Thank you.
TracyJose,
I am an adult with ACC. I know that you want what’s best for your child,but from what I read, he seems to be doing quite well. I was not diagnosed until age 36, so my family and I didn’t know until then that anything was wrong. I just want to give you hope for your child’s future by telling you several things. I too, went through all the developmental milestones as though “normal”. I also was able to get through elementary school and high school without help. After graduating high school I attended college and graduated from there as well. Please continue to give your child any and all opportunities for learning and developing as you can. He sounds like he’s doing well. Keep up the good work!
Regards,
leyd
Hello all. I am very new here so it will be nice to get to know you all.
My newborn son Seth was diagnosed with ACC a week after birth. Being a parent for the first time, I have been freaking out about it. I have researched and found lots of positive prognosis, and so I have a much better outlook for my little guy.
So far the doctors told me that as long as he is developing normally, we should treat him normally, because many people with ACC have lead normal, healthy lives… and some never knew they had ACC until they had tests later in life. This gives me so much hope!
Still, I wanted to join a group that could help me learn what to expect…
Also, as for having ACC discovered after birth, what caused the doctors to run the tests that discovered it??
For Seth the doctors said he acted “Too alert for a newborn baby”…
I mean, I am glad it helped them discover his ACC… but Seth is now 2 months old, and I still wonder how being alert and attentive could be a bad thing that would require testing.
I have a 1 year old daughter named Alannah who was diagnosed with C-ACC at 5 months. She was also diagnosed with Bilateral Optic Nerve Colaboma’s (holes in her optic nerves). We were lucky in the early diagnosis which gave us the ability to get therapy in place. Right now she is delayed in her functioning, she just began to crawl this week and we are so happy about that. I sometimes feel that I am constantly worrying about what the future will hold, as I am sure that many of you were told the same things that we were, that we won’t know what delay’s she will have. It’s been an amazing journey to see her grow so much with the help of her physical therapist but their are plenty of days that I am not sure how to deal with all my worries. I am just hoping to find some support and some advice on ways to help my child grow and develop to her full potential.
Hello everyone…i’m new to this board, my daughter who is 15months old was born with c-ACC, and is blind and has mild hearing loss…i’m a singel mother just trying to do all that I can for my little one… i’m very glad to see and talk with others who know a bout this…
hi there, i work with the careplace team. i think careplace is awesome. i hope it will really help people to share, support eachother and learn. we can all use support and understanding and it is so important for all of us who have experienced difficulties to have a safe and informative forum in which to do so. thanks for visiting - it is really rewarding for all of us to see people reaching out to eachother - it is what careplace is all about.
Hi, my daughter & I live in the Virginia Beach, VA. She is 11.5 year old w/ partial agenesis of the corpus callosum (her Genu did form) and an unbalanced chromosome translocation, Trisomy 11p. She is in a 4th grade inclusion classroom in the public school system with a 1:1 to assist with social interactions.
Hi There, my daughter, who is now 6.5 yrs old, was dx in utero with c-ACC. She developed normally and continues to do so. She is in grade one now, in a regular stream.
When she was dx, I was 20 wks pregnant, and they noticed that laternal ventricles were dilated. They sent me for a level 2 US, and she was dx as having hydocephalus. We then moved cities (and hence, switched drs.) and the new dr. sent me for a prenatal MRI. It was then that we found out that she didnt have hydrocephalus, but had c-ACC. We were going to have a follow up MRI when she was born, but we opted not to because this would involve general anaesthetic (which is not without risks).
My daughter was followed by speech pathology, physical therapy, and my a pedeatrician for the first 2 years of her life, so that any issues related to c-ACC could be identified early and treated appropriately. She was always in the “normal” range for development in all categories.
I hope that by sharing this story, I can give hope for others who receive the dx of c-ACC of their child.
Jen
Hello,
My sister is expecting and is 22 weeks along. She went in for a second ultrasound, as her little girl was small, and they thought that the due date was possibly miscalculated. During this ultrasound, they found that her daughter has complete ACC. I have been reading up on the condition daily, just trying to understand all that is involved. At this time, they see no problems with any other organs. Beyond the complete ACC, everything appears to be "normal." They offered additional tests that she plans to get in a couple weeks for chromosomal abnormalities. We are all praying for the best. We are frightened because the doctors explained that generally any major problems that could occur usually tend to happen at the end of the pregnancy. Obviously, my sister is in shock, and her husband is taking it very hard. I am just looking for some advice, or experiences of others who have had children prenatally diagnosed with this condition. It seems like every case is completely different, which makes it so hard to grasp and manage expectations. I am appreciative that all of you took the time to share your stories. They have been helpful and some have given me new hope. If you have any advice, I'll take any I can get at this time. Thank you.