Delayed Vision Maturation

[Plekhanov]

Dear sleeplessmumof2,

We know how you feel! Our three-and-a-half month old boy doesn't focus or follow with his eyes, although the pediatric ophthalmologist claims his eyes are technically fine, whatever that means. He seems normal in every other way. The doctor suggested DVM as a possible diagnosis, and Joab (our boy) passed his EEG, brain ultra-sound and BERA hearing test with flying colors. We are awaiting a VEP next week. But we are still totally in the dark, and so, it seems, is Joab (he responds to light, but little more than that).

Can you or anyone else tell me what you have discovered, if anything, in the months that have elapsed since you posted your message? I would be very grateful.

Best,

Wendy

Dear Wendy, i am sorry for your situation, i know only too well how worrying it is for you. Can you think back and recall any time when your little boy did show signs of vision focus and tracking. Looking back now and with less fear we can recall that our little boy did seem to focus and track early on and then just appeared to 'switch off'. Im pleased to say that we went and bought every concievable black and white stimulation mobile, books and stuff and as suggested by paediatric opto we just stimulated and stimulated him and fortunately for us he just seemed to switch on!!! If you would like any stuff NCT website had some books and mobiles etc, which hospital are you under? I did make contact with another mother here would recommended portgage and something else like it for support and stuff, if you like i can look up her information and see if she can help you, Let me know?? Also if you just want to talk about your feeling pleeese feel free to cat me as i am sure i know some if not alot of the emotions you are going through, hugs to you

Dear Sleepy Tinkerbell,

It feels so good to hear from someone who knows what we are experiencing, and your kind, encouraging and informative words really help! We don't recall Joab ever focusing, to tell the truth. We have also bombarded him with all that visual stimuli, but so far to no avail. Yes, I would appreciate any additional information. At what age did your young man "switch on"?

Hugs,

Wendy

Plekhanov, I'm sorry, I have no expereince of what you describe but I do have a ds (16 months) with Duane's syndrome, which is where one (or both) eye can only turn so far; with my ds his right eye does not go past the middle so, when he looks right, his left eye goes towards his nose but his right eye stops at straight on, if you can understand that!

Anyway, just wanted to say I have done the rounds of orthoptists, opthalmologists and I sympathise with you. I am lucky that tests have shown my ds's eyes do focus but they are just limited in their range.

I hope you get some answers soon xxx

hi wendy, my little boy 'switched back on at about 12 weeks, although i have to say that every now and then he seems to 'go away ' again for a while, i have to say that personally found it really hard when he switched off, i almost disconnected myself from him emotionally for a few weeks, and i try hard not to do that when he goes off now. There is another mum on here with a child with dvm but her child has other 'brain ' stuff going on, she may be able to give you more information about the portage but for the moment this is part of the information she gave me, I hope it helps in some way.
www.portage.org.uk/

Basically it's an early intervention programme to help children learn
skills in situations where they need extra help (or that's how I understand
it). I think DVM babes without other issues make a rapid catch-up with their
peers.

The Oregon Programmes is like Portage.

I can vouch for the fact that it gets better over time :-). In the
meantime the SN board of MN is great (how I found out about Portage for
example).

When are your next tests due? and does Joab have a startle reflex? How are feeling by the way i tried to CAT you (which means to send you a private email) but you have elected not to receive if you would like to email me off the site please feel free to do so, if not its ok i will just chat with you on here as an when we catch up with each other.