DVM Delayed visual maturation: any helpful advice?
Hello my son is in the process of being diagnosed with dvm although we have not seen the specialist yet to rule out anything more serious i was just wondering if anyone else is going through the same thing or has done already and got any suggestions for ways to help him. hes 2mths 1week. it seems to be such a waiting game!
It must have been wonderful for you when you realised that jessica could see something and i hope that alex will be following close behind, as for the children it must be good for them to see their father can live with it, he must be great with them. I hope that if it comes to it i can make sure zachariah never feels like he's missed out and be a confident little boy myself aswell.
Good luck with your lot, next time i see the health visitor i will be asking about the vista, am now running around looking for a big box to cover and going to grab a load of those internet trial cds! thank you
oh and i tried to look up bobby knockers on ebay but couldn't find them, are they the black ones with coloured lights on? i think i will be getting a disco ball as well though as i'm sure the mirror effect will do something! thanks again.
Well the smile sounds like a good thing it would suggest he's copied it from someone, it was the fact he wouldn't smile combined with the fixation that actually got us looked at in the first place. Does leo copy any expressions or anything? Zachariah has been pretty blank up until now although he does smile now allowing us to really know when he's enjoying himself.
Lights have to be pretty bright to get a reaction, for instance he'll screw up his eyes if the sun is really bright, but wont necessarily see a light in the house unless it's pretty dark to begin with. However in the last few weeks he does appear to be more aware of the lights which is great. And we've even got him following it a few times but still not much luck with anything else. When we had the opth appt he said his eyes appeared normal and there was no mention of sluggish pupils, his optic nerves were meant to be intact but other than that we weren't really told what the other possibilities could be, lebers has never been mentioned but i just looked that up and it says its hereditary, we don't actually have any family history of eye problems which makes it all the more difficult to comprehend. you said leo always looked to either side but never at the face, this is just like zachariah he nearly always looks to the left, even if he moves his head to the right. like you i find it hard to deal with, esp when you hear stories of other mums and their little ones hiding from mirrors or pulling faces etc but i am determined to do the best i can for him and make sure he never feels he's missed out, he really has turned into quite a character now, i do believe what ever happens for a child it is always better to begin with nothing because they can't feel they're missing out, imagine if we were talking about 5 yr olds who'd suddenly lost their sight! it certainly allows you to put your creative thinking cap on when it comes to games doesn't it.
good luck with the erg, and just getting on with it all in general
in the early days zachariah would wave his arms around a lot although if i'm honest i really don't think he was reaching out for anything it was just new baby movements. he's not really interested in toys, mobiles etc although now he tends to look for them with his hand to shove in his mouth as he's teething.
i just looked up the lebers you mentioned and it mentions nystagmus, does leo have wobbly eyes, zachariahs don't seem to have any unusual (?) movement.
i'm glad youve found a mother and baby group i'd imagine although difficult it will really help, i have yet to find one i enjoy, we tried musical minis as i thought one with noise would be good but i think it was just too much for him. i also never know what to say when people try to catch his eye, i'm not quite ready to tell the world as it's hard to explain when i don't even know what it is myself. my husband however is taking it much worse than me and in the beginning would just shut himself away.
he's also an incredibly fussy baby which they say is related to lack of sight and hates the bath.
do you have a vision assistant teacher who comes to you? they do say it is important to try and stimulate the baby as i think if you don't they end up not trying to make their eyes work (if poss) so you sort of have to give it a go, not quite so much fun when there's no reaction i know.
i just thought, i don't know how you feel about writing so much on here, i don't mind but if you'd rather i've just made up an email account so youre welcome to type there if you'd rather
good luc with all
I don't mind writing on here but thanks for the email.
I live in South Africa (i am from England, but moved here 4 years ago with my family), which there's some positive and negatives to, like we got the mri the day after it was requested, but there isnt much support, we haven't been told about a vision assistant teacher.
Leo is my first, i'm 22 and people keep saying im so young for this to happen but i guess its the luck of the draw.
I know excactly what you mean when people talk and play with him i suppose i just hope they dont look long enough to notice. Leo doesn't have nystagmus i don't think, he just looks like he's looking around the room. From when he was born we made a joke that he is just very nosy.
My boyfriend is a 'fixer' so he just says, he'll be fine and is overly positive. Leo loves to bath, dont know why i just suppose because we dont really know what to look for we read into everything.
I do try and stimulate his eyes by playing with him and putting him on his play gym. Like i said about the swiping, im not sure if he can see the toy or its just become habit and he knows where the giraffe is? I think Leo's head is a bit floppy, he can hold it but you can see its a bit of a struggle, also when on his tummy he doesnt really push up on his arms, i guess this is because he doesnt have the motivation of looking for stuff, is Zachariah the same?
floppy head.... well zachariah actually hates tummy time so it's not a great thing to judge but he certainly isn't great and i think it is a lack of motivation, i was told to put toys with lights next to him to help. he certainly doen't push up much but if he's propped on my lap say there's more of an attempt to push up. even when sitting his head does tend to drop more than i think it should but i'm not too sure as i have noone to compare it to. i tend to blow in his hair as that gets his attention. if he fusses a lot on his own, music is meant to be a great help and also you need to be more pushy with toys in hands, you've got to let him feel them and try to get him to grasp them as because he's not seeing there wont be an interest, but you've got to help develop those muscles etc i've also heard brushing lots of different textures across their bodies/face/hands and feet are good as they are learning all the time
Leo is so normal in every other way, its hard to imagine something could be seriously wrong, i guess i just keep expecting the doctor to turn around and say oops we were wrong he's fine!
Hope you are well
unfortunately we are getting really messed around with the mri as the drs dont seem to be communicating very well with each other, but i am hoping to hear by the middle of this week, i will ask about erg too so thanks for that. good luck with all
[Modified by: waiting4baby on June 01, 2008 12:16 PM]
we are STILL waiting to hear when the tests will be i am becoming more and more frustrated, but i think the dr just sees it as a waiting game anyway so not too fussed aaaarrrggh! really hope you get some good news, good luck thinking of you both
We are at the early stages of all the tests. So far his general development is fine, his pupils react well and his retina and optic nerve look fine.
More tests next week. He normally looks to the side and he is certainly way behind schedule with his vision. The good thing is that he can follow black and white toys intermittently. I hope this means that everything will be all right in the end.
Some bad news is that we have the preliminary results of the ERG. One eye's ERG response was absent and the other was considered normal. Although this doesn't mean he can see (complicated even for me, i know). They think it is Lebers Congenital Amaurosis, which means he is blind. There's alot of research and trials going on at the moment on the condition so i'm hopeful for that but i'm also trying to be realistic and concentrate on making life as normal and fullfilling for Leo as possible.
Hope all is well with you waiting4baby
Good luck Finn, I'm sure all will be fine and for all of us whatever happens we will have confidence in our parenting and love for our gorgeous babies.