Hi my LG is nearly 9months old with dvm. She isn't rolling over or sitting up. Her head control is a little wobbly and she still isn't reaching out or grabbing her toys. Her consultant still puts this down to dvm. I know this is an old post but if anyone is still going through the same situation, I'd love to hear from you. This is my first baby and feel so confused and alone. Xxx to the parents on here how are your little ones now.
I've just read the whole thread and was grateful to see your post from this year.
My LO is 9 weeks tomorrow and this week had an appointment with a paediatric ophalmologist. Her eyes were continuously moving and she isn't fixing and tracking so we thought she had Nystagmus. But the Consultant thinks it might be DVM.
I'm very anxious and quite devastated as my first daughter speby time in neonatal ward due to meconium during birth and we were worried that would negatively affect her but luckily she is fine. Whereas we had a straightforward labour this time and there is no family history of eye problems and baby's eyes seem to be physically fine but she cannot see.
Hello, just to let you know (I don't know if you will find it helpful) that Helen has been diagnosed at 16m with Pontine Hypoplasia, which is causing the nystagmus and the lack of coordination. She is know 4,5y, sits, crawls, doesn't walk or stand on her own but walks with a walker, started to speak (words mostly and some phrases). She is having OT, PT and language therapy twice a week for the last 3 years. Her vision has improved greatly thanks to an intervention program- she can now look at pictures in a book and actually see them. My advise: don't listen to doctors who tell you to wait and see. Even if you can't get them diagnosed, start the interventions (PT, OT) on your own. I know I would have if I could turn back time...
Thanks Helens_Mum. we have a follow up appt in 3 weeks and I hope there will be an improvement. But I do worry that despite DD appearing 'normal' just now there will be a hidden neurological problem.
I will be asking about PT etc at next appointment.
I know this is a really old post but when I realised my little girl couldn't see around 6 weeks old and I was researching, there was not much info out there esp on dvm. I often read posts on websites but rarely the poster came back and added how it turned out. I wanted to know more and never could so I have returned here as I hope my post may give others hope and encouragement. I was terrified when hv agreed my girl couldn't see. It all moved quick and at 8 weeks we saw an eye specialist who confirmed she could only see light. He dilated hwr eyes and said nothing physically wrong they look perfect it's just dvm don't worry. Easy for him to say. She wasn't smiling and just looked thru everything. Awful time. At 9 weeks I noticed she could see my black a d white polka dot changing bag. I moved it, she tacked it. It moved fast from there, black and white patterns to pictures to colourful objects to faces to... Everything!!! We couldn't believe it! At 12 weeks we were pretty sure she saw everything. She smiles away as we stick our tongue out, chats and laughs with toys and just interacts. She is a different baby. Yesterday at 16 weeks the eye specialist signed her off with having perfect vision. My girl always was perfect to me but now she even is to the docs too.
Dvm is terrifying but it can be ok. Love to all, I hope I have helped, I so wanted to find more posts like this when we were diagnosed xxx
Thank you for that post. Often posters don't come back so uou don't know what happened.
My DD is 13 weeks now and seems to be able to see black and white pictures and toys. Tracking and following is improving. However her eyes still move side to side frequently so I'm back thinking she has Nystagmus. She hasn't discovered her hands yet.
2 more weeks till her appointment so we'll see what they say.
Hi, what is your appt for? I hope it is useful. we found that we were just told that until she is 6 months they don't want to check the baby further as in most cases the vision does come by then. they did dilate out los eyes to check structure and optic nerve in particular.
Great you lo sees black and white. ours moved quickly from there.
if anyone would like to chat get ideas or advice please chat to me. I'd like to be of help! x
It was a follow up Ophthalmology appt. Since then we' had an MRI and a VEP test. We'll get the results in 2 weeks at our next Ophthalmology appt.
She is now 22 weeks and her eyes since move side to side. But she can see to play with toys and follow things. However she can't see very far.