Location: Miami, Fl
How did you find this website? another acc website
My son, Nami, is 6 weeks old and has isolated c-acc. He was diagnosed in utero. We stayed in the NICU for 1 week mostly for testing. He had an MRI, pituitary gland hormone tests, ophthamology visit and tests, and physical therapy. So far he only has weak muscle tone in upper extremities but mild.
Thank you for creating this site. It has alot of information.
I am looking to find other moms locally but have not had any luck.
How did you find this website? Web Search
I love this site. It has a lot of good sayings and good information. Please check my blog out that I just started.
How did you find this website? google
Thank you for the info, I'm sure I will be visiting many times from now on.
Location: Antelope, Ca.
How did you find this website? Google
Homepage: None yet
My daughter with ACC is doing wonderful..I gae her alot of input and still do it...We play at night she plays the guitar and i sing..she is smart and intelligent....want to write a book about these kids...any help will be benificial...
Knet Was here..
Greetings from Argentina.. bye
Location: Las Cruces, New Mexico
How did you find this website? Finding ways to help my son with his disorder
I am happy to see that there are alot of parents going through their trials with their children and I know that I am not alone in my jouney. Best wishes to all of you
Location: Denver, Colorado
How did you find this website? My mother found it through searching the web
My son was just recently diagnosed with c-ACC and feel completely overwhelmed. He isn't quite 6 months old and since 3 months we had been pushing for further testing since he just didn't seem on track like my older daughter (3). The doctor wasn't terribly concerned as he was on the large side and growing great, tracking toys, responded to voices and had good eye contact. I kept pushing though.
We were referred to our local early intervention services and started Occupational and Physical therapy before getting the MRI. He has responded great to the therapy making remarkable physical improvements. We meet with the pediatric neurologist in less than a week, but feel more hopeful than I originally did when the news was delivered by our pediatrician. He didn't have a lot of answers, which led us to search on the web.
I am in full information gathering mode and setting all the therapies necessary to help him along this journey. Your website is great and provides the hope so many newly diagnosed parents need. Do you have any experience with Interactive Metranome therapy? I saw a lot of information about it, but am looking for anyone who has had direct experience.
Thanks for creating such a great resource for this unknown journey we are now embarking on!
Location: Fredericksburg, VA
How did you find this website? Goggle
Hello. I am 35 weeks pregnant and have just been told that my son has partial agenesis of the corpus coliseum and I'm hoping to connect with others who are experiencing the same thing.
Location: Austin Texas
How did you find this website? surfing
I want to find a support group
Location: Marion, Ohio
How did you find this website? Google search
Thank you for all the resources listed on your site.
How did you find this website? Just searching acc
My daughter is 10years old and she has ACC and was noted that their old be something wrong when I was pregnant with her. She is fine but she don't walk, talk, or setup. She also has CP. she is a very happy girl!
Location: st helens, merseyside, england
How did you find this website? looking for advice on acc
i have a 10yr old boy with acc, and find it really lonely as there is no one else within a 200 mile radius who seems to have this condition..x
message from Sandie (guestbook owner):
Hello Vicky, Thank you for taking the time to sign the guestbook. I am also the parent of a son who has ACC. He is 18 years of age. We live in the USA. I am very sorry to know that you are finding it really lonely and that you have no support from people in your immediate area where you reside in England. Please be advised that I will be sending you some information today through e-mail pertaining to ACC and Education & Social Skills Challenges as well as ACC support group information for your review. I'm unsure of the specific advice you are seeking on ACC. If you should have any questions or if you would like to share your concerns, or if you might be comfortable sharing more about your son...please feel free to e-mail me anytime.
Location: Grass Valley, California
How did you find this website? through a friend of my daughter-in-law
My son called to let me know that they had received the news from the doctor after viewing the MRI that my son and daughter-in-law's, second child/son due in Sept. has ACC...they will know more in a few days. We are all full of hope and want to know EVERYTHING we can, so we will be prepared. I cannot wait to hold him and tell him how much he is loved. Thank you for this site.
How did you find this website? google
Olá sou brasileira, mãe de uma menina com DCC, descobrimos a pouco tempo, em busca de compartilhar informações e trocar experiências criei a página https://www.facebook.com/AgenesiaCorpoCaloso através dela fui encontrando algumas mães de crianças com ACC, porém todo conteúdo na internet sobre ACC é muito vago, e decidi procurar por página em inglês e foi assim que encontrei seu site, gostaria muito de ter mais informações com mães mais experientes principalmente sobre como educar minha filha, espero ser o início de uma amizade!
Imoni Braz a mãe da Juliana
How did you find this website? Searching for information on my sons new diagnosis http://www.acc-community.com/forum/viewtopic
My son is 4 1/2 years old and has had developmental delys since i can remember he never hit mile markers like his younger sister has he doesnt speak more than a hand full of distorted words. We went to Dartmouth in Lebanon NH for and mri and i sat and waited for a week still waiting for blood work and was told my son has CACC. I read your "What to expect" and realized this was what ive been going through vor years without a single clue to it being this severe. Im still unsure of my sons future hes in speech therapy occupational therapy has a speech pathologist and is just starting kindergarten this fall. His cousin is in his class and she talks all the time and i see them play together. :'( Ive seen my son bulied had people call him retarded because he is different. I never imagined a diagnosis of this scale never i just thought we had alot of development to catch up on. I am my sons only advocate im a single mother of two beautiful children and one is very unique and special and to see people look at him the way they do tears me up i lay in bed at night wondering why my son why does he deserve this why did god do this to him. Ive questioned before the diagnosis if it was something i was doing wrong and if i could have done something different in his life it wouldnt be like this for him. Im absolutely blank and empty to know there is no one and nothing i can blameor begin to fix. Jaymeson is my angel as his sister Malia-Raisa is too and yet i dont know how to put him back together how to make him all better its not a boo boo mommy can kiss and make all better its not something i can look pastandhope it gets betteri can only pray all that i dois right for him and i doall ican within my power and ability is enough. Please ill take any and all advice i can get i myself am still unsure of what will happen in the future i feel so lost so out of control and helpless.