Please introduce yourself!

[cp5910]

Hello Everyone,
My brothers wife is 36 weeks pregnant with their first child and was told yestrday that the baby has ACC. Of course, everyone is frightened to death and has no idea what to expect. Please give me some insight of what to expect, they are besides themselves and looking for answers and the doctors wont tell them anything. They say it could be slight or it could be catastrophic. Also, the baby is very docile right now and my sister in law doesn't feel him move very often. All signs to this point have been for a perfect child and within the last week things have gone very wrong. What do they look for, watch for, what are the signs of something being "catastrophic"? I read all the posts on this site and are looking for some of your experiences to get some answers. thanks

[pwells]

Hi - Hope eveyone is having a good day! I would say GREAT DAY - but that seems like to much pressure. My name is Pam and I am so in love with my little granddaughter - Abigail Grace - that I can be a little annoying. (wee bit) She is 14 months old and along with many heart issues (3 open heart surgeries to date) she is also C ACC. We knew this from the start, and aren't sure where that will take us, hoping that her brain forges a new path and all is OK, but ready and willing to deal with whatever we have in store. She is the sweetest, happiest little girl. We aren't sure if she is behind because she was in the hospital for 7 months, or because of the ACC or combination thereof. Abby (I call her sweetcheeks) has a feeding tube, but only uses it for her medications now. She drinks her bottle usually, but will not take any food by mouth. She is at the age where she really needs more nutrition than her formula can supply, so they are adding Peddiasure to her feedings. Unfortunatley, she doesn't seem to like the switch, because she has been throwing up quite a bit. We were told she should be able to eat eventually and speak,(right now Abby doesn't make many sounds). Abby has physical and speech therapists, and her mom is a teacher (or was - she now needs to stay with Abby) so she is worked with a bunch. Thought maybe someone would be able to give some ideas or suggestions that helped them when it came to eating. Since Abby was in the hospital for so long and intubated - that could be why she isn't very verbal and wants no part of eating - what are your thoughts.

ps - if this is to lengthy, I am sorry, not use to doing this, and don't really know how far to go - thanks for your time!

[casjo]

Hi my name is Alex. I have a 22 month old who was diagnosed with ACC while still in the womb. It was very difficult throughout the pregnancy after we found out there might be something wrong with him. We tried to keep positive and move on. Our son was born and he is just great! He is having difficulty reaching the milestones but he is overall a very happy baby. He has recently been diagnosed with CP and the doctors believe there might be some other underlying issues with him and have told us to see geneticists who are currently testing him for things I have never even heard of. It gets difficult at times, but every time I look at my son and see his smile and everything that he has accomplished in hitting his milestones it makes me believe that everything will be alright.

[eribble]

Hello! My name is Erin and my daughter Berkley was suspected/diagnosed with ACC at 18 weeks gestation is 2007 after a cyst was discovered in the area of the CC. When my daughter was 8 days old, a CT-scan confirmed that she had C-ACC so our pediatrician sent us to see a neurologist. He looked her over from head to toe and check her reflexes and her response to a few things and scheduled her MRI. Our pediatrician had also sent us to an opthamologist who suspected she had occulocutaneous albinsim so then we were scheduled to go see a geneticist for further tests. We never made it to any of those appointments. Berkley died peacefully in her sleep at 4 weeks old. I kills me not knowing what the those tests would have revealed and if there was something that could have been done to prevent her death. Her cause of death couldn't be determined and because of the ACC, her death wasn't ruled as SIDS. We accept it as that because its easier to explain to people sometimes than going through all of the ACC stuff. Even though she's no longer with us and my other children don't have ACC, I am still very much interested in it. Its been two years since her death and I'm still trying to find out if there is a link between ACC and death. Because we never got those tests done, we will never know if she just had C-ACC or if there was something else going on too. If anyone has any information that you think might help me, please, please, please send it to me!

[GreeneAliens]

Hi my name is Amanda, I have a 7 year old with ACC, at times she is sweet and innocent and at other times I am a a loss as to what to do with her. She gets mad really easily and calls me every cuss word in the book. The social workers that are involved with her have suggested that we put her in a group home with people that would be trained to deal with her. I have mixed feelings about this, she has 4 other siblings 1 older and 3 younger, and I worry about their health and wellbeing as well. I am at a loss as to what I should do. Any feedback would be greatly appreciated. Thank you for being here.

[tora4850]

Okay, but when I tried to preview what I just typed, it all disappeared! Very frustrating. Should have taken a screen shot first, if I had known that would happen. I have tried joining one of these ACC sites before, probably this one, but gave up because everything was too hard to explain. My nickname is Andy. I will be sixty on April 8. ACC was revealed by an MRI scan back in October of 1994 when the company I was working with for almost 16 years was cutting out their old gray mares. I also have had epilepsy, controlled with medication, since I was nineteen. Problem was though, there were multiple times when I forgot to take the medication for more than two days and had enough seizures to give me short-term memory problems along with neurological damage on my left side.

These two ailments have caused many problems over the years. I thought I had been able to adjust to a certain degree, but never realized that my social problems may be influenced by the agenesis, from what I have been told. My ex-wife, a former grade school teacher from the Philippines, is ignorant about ACC, and blames my behavior on me and not the congenital defect. I am back living with her, but think I should move back out and need help. I currently have an appointment with Asian Counseling Services and hope to clear this whole mess up. We got divorced back in 1987. Talk about old issues. Plus I have gone to neurologists, but never got the right answers about ACC. I was just handed a pamphlet and received a big bill for being probed. I have no sense of direction, trouble making decisions and completing tasks.

[fed_ex]

Hi,
My mother has just been diagnosed with ACC after having a CT scan after a bump on the head, and at age 50, for her has answered some questions. I'm here to answer some for her, as she does not bode well with computers let alone the internet.
Cheers,

[digg45]

I am new to this message board, but not to acc, my daughter casey is now 13 and we are lucky she is very health, she has many learning problems in school and has been on a iep since preschool, she has always been in public school and has always got tons of extra help and all kinds of therapy. Thru the years she has had many types of testing done and we are currently trying to get some testing done for educational purposes, i'm always worring that she should be in some kind of special or private school.Most doctor really dont know much about the acc and dont think it is a big deal. I am always questioning her bevaivior, is it just her being fresh or is it the acc??? social she does ok, she has alot of trouble leaving me and it seems like everything is a fight with us, homework, showers,getting dressed in the morning, ccd, and it gets very tiring.We have known about the agenisis of the corpus collosum since she was only months old. I am alway worried about her future and what it holds. i also have a 8 year who has no health problems and when they sit down and do homework together, you can really see how casey is way behind. I am currently looking into getting a advocate for school and hoping they can help. does anyone is the boston,ma area know of any advocates that may know more about acc???please email me at pattyl456@verizon.net if you can help

[EvasMommy]

Hi my name is Julie and our daughter, Eva turns 1 on June 5, 2010! Eva has ACC and also a rare congenital heart defect called Hypoplastic Left Heart Syndrome. (Her left side of her heart did not develop in utero and she is left with only her right side of her heart) She has undergone 2 open heart surgeries in the past year to re-route arteries to her right side of her heart so she gets oxygen rich blood pumped to her lungs and through her body. She has to undergo one more heart surgery at 2 years old. (That pretty much sums up the very long winded medical diagnosis! :)

Anyways, Eva was diagnosed with ACC in utero at 32 weeks gestation. We were very upset to say the least. We had found out about the heart defect at 19 weeks pregnant, and now this! At the time, we were mainly concerned for her heart condition, because we were told she may not live after being born, so the ACC was secondary to us at that time. We had to make sure she would survive the heart surgeries before worring about the ACC!

So fast forward a very long year and she is a very happy, alert baby! She is doing pretty well, considering! She is behind developmentally. She does not roll over, or sit up just yet, but she is making strides at her own pace and that is all that matters! She sees PT, OT, Speech, and developmental Specialists every week. They all see the improvement and potential in Eva. She smiles all the time, reacts to her surroundings, and is determined not to let this limit her! (I see it in her eyes! )

She does have some issues (of course) as she hospitalized for the first 4 1/2 months of her life due to her heart defect and did not get the proper stimuli for developement during hospitization. She does not eat by mouth. She has a G-tube and gets nutrition through tube feeding every day. She also vomits after every feed, which is totally annoying and frustrating. We are going to see a GI specialist here pretty soon and hopefully they can help with that.

Other than that, we are definetely in a better place mentally with her than we were when we first found out our daughter had ACC. She is such a blessing, and she brings us joy everyday.
Thanks - Julie

[mbeck]

Hi I am the mother of a precious little boy that we just found out has ACC. He is now six yrs old. When he was 3 weeks old he had heart surgery. While in the hospital they told us that they did every kind of test on him and the only problem seemed to be his heart. By the time he was around 10 months old, I noticed that he was not trying to walk as my other children had. So I ask his dr. about it and she said not to worry. Well by the time he was 15 months old he still wasn't walking and I asked again, and again I was told not to worry. This went on until he was 18 months old, when I took him in for his check up, she acted like she was in shock that he wasn't walking yet, so she decided to send him to a neorologist. He told us not to worry. Well my husband and I decided to let another dr check him. God Bless this dr, for she told us he was low muscle toned and he should have been in therapy. So she sent our dr. a letter and told her that when we went in with a concern the first time she should have sent us to some that could help us. Well it seemed like every year of his life he was having some kind of surgery. When he turned six his new dr. (yes we switched) sent us to have a brain scan done. That is when we found out that he has ACC. My husband and I are just getting information on ACC and we are eager to find out anything that we can, so we can help our little boy. He has a loving spirit about him and he loves people, he speaks to everyone, and I am sad to say not everyone treats him with the same kindness. It just breaks my heart. He is a person and he just wants what everyone else wants to be loved. So if there is anyone out there that can help us, please do,,we want whats best for our little boy. Thanks so much, mbeck.