My daughter


#1

My daughter is 4months old and we just found out she has ACC and we go the 22nd to a nerologist to see excatly what is wrong… we do think she is blind… she doesn’t track object but the sun seem to hurt her eyes… she doesn’t push her self up yet when laying on her stomach and still has trouble holding her head up for very long on her own… does anyone else have these symptoms… if it weren’t for her eye sight i would have never know…do you think she may ever see 1/2 way ok…


#2

I dont know hun but my daughter had delayed visual develpoment she was tracking anything till she hit about 6 or 7 months old but now is fairly good with her vision :slight_smile: so there is hope


#3

does she also have colpocephaly?


#4

Hi
My son is now 2 1/2. We found out during the pregnancy that he has ACC. At four months he would barely push himself up. He always held his head very well, but he did not track at all. He is not blind, although his vision is poor. He sees an opthamologist regularly. He has issues with his optic nerves that we are in the process of learning more about. We will be going to Boston next week to Tufts. I know that at 4 months we weren’t worried about him being blind, but then again, we knew that there was a problem already. We thought he was behind and he is really. His visual tracking is still slow, but he definitely sees. I dont remember him looking me in the eyes until later on. Don’t know if this will help. I would say you should see an opthamologist. I am sure that is what the neurologist will recommend.


#5

Wow thanks this gives me so much hope… we saw a optologmist… he wants to see her back in 3 months cuz he wants to see what the nerologist says cuz hers eyes are fine its just her brain… i just hope it is slower development! OMG this makes me feel great.


#6

Hi Again
Did the opthamologist look at your child’s optic nerves? As I had mentioned earlier we were headed to Boston to see an opthamologist there. Our opthamologist here in Maine wanted a second opinion and there are tests there that aren’t performed here in Maine that can be done there in Boston. We went on Thursday. My son’s optic nerves are pale. They should be red (not sure how familiar you are with the eyes). They ran a few tests down there. They performed a VEP (visually evoked potential) and an ERG. The ERG tests his retina which is in the back of the eyeball. He better this year on the VEP than he had last year. This year was the first time that they did the ERG test. This turned out poorly. This tells us that my son has very poor vision. He has glasses which help tremendously according to the test. He can’t tell us how well he sees or if glasses help so they use these tests on the little ones. The tests also tell how well the brain communicates with the eye. I am sure these are all tests that you will experience in the future when your baby is older. They need to be able to look at a screen and other things. Anyway… the opthamologist down there told us that there are syndromes associated with the optic nerve issue and the retina issue. Our next steps are to see other specialists. My son has so many, what are two or three more right? We will be seeing a neuro-opthamologist and we will be going back to the geneticist. We thought we were done with the genetic testing. (Everything else had turned out fine.) They will run metabolic tests as well. The opthamologist also suggested that this could be caused by a metabolic issue in the brain. My son has an MRI on June 20th. I think you will find that having the MRI will help tremendously. So we are still left with questions but will probably find out more info after a couple of months of tests and doctors talking to other doctors. I don’t know if any of this info is of any help. What did the opthamologist say about your child’s sensitivity to light? I bet that you will find though that many children with ACC have tracking issues and/ or vision problems.
Let me know if I can help.
Abby


#7

I should have said yes you have so much to be hopeful for. :slight_smile: Things may happen late, but like I had said, my son does see and he didn’t track at all or look us in the eyes for a very long time. His tracking is still slow, but he becomes more aware everyday.