Hello..I hope this thread is still active. My 14 week old boy has just been referred to ophthalmologist. He couldnt fix and follow very well and has eye movements like he is looking around. I think it us nystagmus but peadiatrician said its roving eye movement. Now waiting for appointment. I am extremely depressed. He hasn't started rolling over yet and head control is wobbly. Overall very happy and active. I would love to hear from someone who is or has been in the same situation:(
My daughter is now nearly 2 and as albinism with nystagmus. It was the VEEP test that confirmed the albinism as it had been missed twice before because she was so young and it's hard to get babies to cooperate. Her nystagmus was picked up at 8 weeks. At the time I was told, " well, we think she can see light." I worried myself sick.
However we had brilliant care from our local ophthalmologist and he referred us for all the tests to get to the bottom of her nystagmus. So my advice is wait for your appointment which hopefully will be soon and take up every test offered.
I'm not sure what defines roving eye movements vs nystagmus So can't help there.
If it's any help my daughter' vision has improved hugely especially in the last year. It doesn't seem to hold her back at all.
Thankyou so much for replying. I am really glad to hear about your daughter. Yes my husband is really supportive but I am a worrier myself and get depressed very easily:(. I went to gp and told him about my concern but he after having a look dismissed it that it didn't look like nsytagmus and very reluctantly referred us to a peadiatrician. The peadiatrician checked him and he followed her light on one side and when she tried to communicate to him she said there was a reaction but he definitely has a problem with his focus. When I used the word nystagmus she said I will not say nystagmus but roving eye movement. She referred us to an ophtalmologist.
My son follows most of the objects(sometimes on one side,sometimes on both side and up). He makes eye contact but very rarely and when held really close. He also follows us sometimes. He definitely responds to our voices and smiles and talks too. My daughter has an appoitment at moorfields eye hospital(for her squint treatment) next week. The paediatrician suggested to take our baby along and ask for an opinion before he gets his appointment. I just hope that things turn out to be good.
Thanks again for replying and sharing about your daughter's progress. I know every case is different but it certainly has raised my hopes and spirit😊
we only found out our baby girl may have LCA this week. We noticed she wasn't fixing and tracking so we took her to out GP who referred us to the eye clinic at Sydney Children's Hospital.
When we were at the hospital they were good as we had to travel long distance we had the initial appointment the first day and an ERG that afternoon. The ERG results were not promising but we still have hope. The tests err done in a dimmed room but not full darkness. I have done light tests at home in full darkness and shown my partner and she and I have both seen our little girl react.
We returned to hospital the second day and saw a paediatric opthamologist and he said her vision is extremely poor to none at all and looking st the ERG they suspect Lebers.
We went back the third day and saw nuerologist and had blood and urine tests done. We now have a three month wait to do an MRI, and anothet ERG eye tests. We are preparing for the worst yet remaining hopeful it is a severe save of DVM and she will prove the doctors wrong and start seeing some sort of improvement before her next appointment.
just wondering if there is any ad anyone can give that's goig through a similar situation st the moment.
I just wondered if any of the previous posters still get notifications on here? I could really do with some help and advice. I know some of these posts are really old but can't seem to find anyone else in the same situation as us.
Replies
Well that's great, how is she during Play time ? How does she interact ?
If all tests were negative , how do u know sh has brain damage ?
ok . right u . dr told me her brain not damage !!! ant nod diagnos autism this time and must wait !!
she very love play !!! bue delay babb;ling and nor response to herrrrrrrrrrrrrrrrrrrrrrrrrrrr ll theme !!!!!!!!!
Hello..I hope this thread is still active. My 14 week old boy has just been referred to ophthalmologist. He couldnt fix and follow very well and has eye movements like he is looking around. I think it us nystagmus but peadiatrician said its roving eye movement. Now waiting for appointment. I am extremely depressed. He hasn't started rolling over yet and head control is wobbly. Overall very happy and active. I would love to hear from someone who is or has been in the same situation:(
Hello,
My daughter is now nearly 2 and as albinism with nystagmus. It was the VEEP test that confirmed the albinism as it had been missed twice before because she was so young and it's hard to get babies to cooperate. Her nystagmus was picked up at 8 weeks. At the time I was told, " well, we think she can see light." I worried myself sick.
However we had brilliant care from our local ophthalmologist and he referred us for all the tests to get to the bottom of her nystagmus. So my advice is wait for your appointment which hopefully will be soon and take up every test offered.
I'm not sure what defines roving eye movements vs nystagmus So can't help there.
If it's any help my daughter' vision has improved hugely especially in the last year. It doesn't seem to hold her back at all.
i hope you have good support at home?
Thankyou so much for replying. I am really glad to hear about your daughter. Yes my husband is really supportive but I am a worrier myself and get depressed very easily:(. I went to gp and told him about my concern but he after having a look dismissed it that it didn't look like nsytagmus and very reluctantly referred us to a peadiatrician. The peadiatrician checked him and he followed her light on one side and when she tried to communicate to him she said there was a reaction but he definitely has a problem with his focus. When I used the word nystagmus she said I will not say nystagmus but roving eye movement. She referred us to an ophtalmologist.
My son follows most of the objects(sometimes on one side,sometimes on both side and up). He makes eye contact but very rarely and when held really close. He also follows us sometimes. He definitely responds to our voices and smiles and talks too. My daughter has an appoitment at moorfields eye hospital(for her squint treatment) next week. The paediatrician suggested to take our baby along and ask for an opinion before he gets his appointment. I just hope that things turn out to be good.
Thanks again for replying and sharing about your daughter's progress. I know every case is different but it certainly has raised my hopes and spirit😊
Hi all,
we only found out our baby girl may have LCA this week. We noticed she wasn't fixing and tracking so we took her to out GP who referred us to the eye clinic at Sydney Children's Hospital.
When we were at the hospital they were good as we had to travel long distance we had the initial appointment the first day and an ERG that afternoon. The ERG results were not promising but we still have hope. The tests err done in a dimmed room but not full darkness. I have done light tests at home in full darkness and shown my partner and she and I have both seen our little girl react.
We returned to hospital the second day and saw a paediatric opthamologist and he said her vision is extremely poor to none at all and looking st the ERG they suspect Lebers.
We went back the third day and saw nuerologist and had blood and urine tests done. We now have a three month wait to do an MRI, and anothet ERG eye tests. We are preparing for the worst yet remaining hopeful it is a severe save of DVM and she will prove the doctors wrong and start seeing some sort of improvement before her next appointment.
just wondering if there is any ad anyone can give that's goig through a similar situation st the moment.
I just wondered if any of the previous posters still get notifications on here? I could really do with some help and advice. I know some of these posts are really old but can't seem to find anyone else in the same situation as us.
Thanks in advance.