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!

hi hun not sure what advice I can give you or what you are after but if I can help I will. :)

I have 3 girls ((Lucy 4, Jessica 2 & kate 1)) and alex 10 days old who all have DVM ((except Lucy)) aswell as other eye problems.
Do you know if he has any other eye problems/conditions yet? And are they refering you?
Ask for a visual impairment teacher ((vista)) they are fantastic loads of info on how to help and encourage your boy.

The best way to encourage him is bright coulourful toys, black and white stripes, play therapy, stimulation through touch for example we use a big cardboard box on one side we stick bubble wrap, we use cotton wool, dvd's old ones of course ((reflects light and colour)) stick them on the side & anything ele you can find to get them to feel & touch ((can't remeber the last on lol)) put a soft blanket on the bottom and put them in to touch and feel around my lo's love it.
Also bobby knockers ((they light up and are like a disco balls and spin but don't make any noise so they follow the colour & not any noise))
errrm thats all I can think of at the moment but if you have any q's or just need to chat were all here take care xxx

space blanket :lol:
thats the one I couldn't think of, its used by space shuttles it's like tin foil but can't be ripped we got ours off our vista fantastic they are reflect and to touch them it's like tin foil lol hope it helps xx

wow, what a good idea, thanks.i love the box idea but would you say 2 months is too early to try that or the sooner the better, i know we are meant to be stimulating him more than a 'seeing' child to get his eyes working. i have not been told about any other eye problems as i am only in the beginning of finding out. i don't really understand much about it, it hasn't been something my husband or my family have heard of before - do you know if it's pot luck or is there more to it than that? he's seen 2xdr and consultant and they've referred him saying dvm is what they think it is. I know you said your children had additional eye problems but are they able to see better now, i have been reading on sites that they usually get their sight by 6-9 months and it delays all other parts of growing like crawling, walking, talking, did you find this? i am sorry to blast so many questions at you but it's so nice to find someone who can actually relate to it and not just give medical jargon. thank you

oooh another qn, sorry! the VISTA is that someone for later on or something i could ask about now?

oh ask to be seen by vista now, they have loads of info they have support groups and children with the same conditions and they are trained so know what will be best stimulating him and what will work and won't work for him they really are fantastic I can't praise my vista enough :lol:
And start the box and stimulation now, sooner the better.
Alex is only 11 days old but I've started stimulating him already. And my vista have already added him to the books ((it's a joke I said he'd be born blind and to add him to their list while they were trying to be optimistic that he wouldn't be-I won ))
I'm not to sure if it's pot luck for us it's genetic for you as you have no family history it may just be pot luck.
But dad ((my partner andy)) has the same problems and is registared blind and so are the 3 youngest but it's not just the DVM they have several problems aswell.
Yes by 6-9 months and it does delay walking, talking crawling but they do catch up very quickly and doesn't affect them throughout the childhood it's almost like a light is switched on and they start to do all the things they should have done but it happens all at once ((in my experiance, for example Jessica had no sight till she was 9 mths and now can see a meter away from the end of her nose but that is caused by her other eye sight problems not just the DVM))
don't worry about the q's ask away if I can help with advice I will hun it always easier when someone else has some sort of experiance to what you are going through as a family.

have you noticed anything else about his eyes? as in are they different to you do they move differently?

anyway hope your ok and you lo is ok too xx

thank you, well we have finally been given the specialist appoinment for next monday 18th, am dreading it but at least some of the waiting will be over. All i've really noticed about his eyes are that they don't seem to focus on anything, he certainly appears to look around him but at nothing and never stops on anything of interest. When a room is too bright he will squint and his pupils do react to light although don't follow it. The eyes seem to move in sync which i think is a good thing and he appears to have tear ducts. he has brown eyes which apparently makes it harder to tell (dr said) but it sounds so silly sometimes i feel like i am looking into 'dead' eyes or he'll give me 'the evil' (which maybe all babies do, this is my 1st) and occasionally i feel like although they are brown they aren't properly, if that makes sense! it's like some lack in colour and i am pretty sure that is a sign of blindness as i've seen it in blue eyes before but i may be looking too closely or over reacting. Hopefully the specialist will be able to clear up some of my queries anyway, but i've read that even if he is diagnosed with dvm you still have to wait the 6 months for a review to see if they were right!
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.

Hi, sorry to butt in. Did you get any results from the specialist? Hope was good news. My baby boy is in the process of having tests for his eye sight, he's 4 months old. I'm hoping and praying sooo hard its dvm!

hello,no problem, ... actually no we are still in the process of waiting for an 'official' diagnosis, he was meant to have an mri scan last week but we were messed about so i'm waiting to hear when we can go again. i'm so sorry you're having to go through this too, it is incredibly frustrating isn't it. you seem to keep having to wait for one thing or another making it very hard to deal with possibilities, like you i am hoping it is dvm but as each month passes i worry more and more. has your son only just started having tests? we first noticed problems with zachariah at around 6 weeks, he's now almost 6months (june 3rd) he doesn't appear to fix on anything although sometimes responds to light. we waited 4 months for a smile, heartbreaking but so beautiful when he did it. i dont know how far into everything you are, i'd imagine at 4 months you've already got a lot of information, but i'll say it anyway, as difficult as it is, keep trying toys in front of him as one day you may find a reaction, we do get more response now but nothing drastic and you always worrythat it's just wishful thinking.what tests is/has he having/had? we've seen opthomologist who did the drops and says all should be working, and been for follow up to check progression, and as i said we're now waiting on an mri. if you ever want to chat feel free i'm on here quite a lot and have no problems talking about it, or just listening if you want to babble. keeping my fingers crossed for you and your little boy

Thanks so much. I suppose i first started to notice something wasn't right when Leo was about 6 weeks. Interesting you said you had to wait for a smile because he smiled at 5 weeks but only ever looking to one side or the other, never at my face.We've been to an opthomologist too, she said all the parts of his eye's look normal but his pupil reaction is sluggish. We've also had the dreaded mri, which luckily came back normal. Having the mri is horrible because they have to be under general anaestetic (sorry, spelling...), but as with all these things, its worth it and within an hour or so he was fine. Leo seems to react to light, and in a darkened room seems to be able to see a cell phone light. Like you said though, it could be wishful thinking. There's so many other things the doctors say it could be, i'm hoping as i'm sure you are its not Lebers. At first i was devestated and i'm still struggling but i've come to the point where i know whatever happens i'll do the best i can and know i'll do anything to make Leo happy and lead a fulfilling life. It's nice (or not, if you know what i mean?) to know there are others out there going through the same thing. I hope we both have good news soon. Next wednesday Leo's having an ERG so i'm hoping that comes back normal, although im trying to be realistic. Good luck, and let me know, when you know more!

thank you. no, i agree, it's awful to think someone else is going through it but at the same time nice to find someone you can talk to or compare notes, especially when it is a rare thing, it makes it near impossible to find anyone and even the professionals can't really point you in any direction. from what you've said they sound quite similar, he's a real cutie by the way

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

Hi there, i'm not sure if Leo copies any expressions, i don't think so. He does babble and laugh alot. Does Zachariah (lovely name by the way!) seem to swipe at stuff? When i put Leo on his play gym he swipes, mainly with his left hand, at the giraffe. He also seems to react to light in the same way that you mentioned, although i said this to the opth and she said this could be a natural reaction or something. Sometimes his eyes seem to squint as if trying to focus, but again she said this could be his brain 'trying' to see?? So as you can see she's not that positive! Lebers Congenital Amaurosis is different to the other lebers and is not hereditory. Apparently this is the most common cause of infant blindness, but neither of us want that. We are the same, as neither of us have a family history of blindness or anything so it came as a major shock! Its just not one of those things you worry about. Its amazing all the things you do worry about, like cot death etc and then something like this happens. The week before i went to the paed i had joined a mum's and babes group. I thought about not going back but for Leo's sake i did, and although its hard to see all the other babies looking at stuff, i feel i cant hold Leo back in all the other areas, and it cant hurt to try and stimulate his vision. When is your mri? Hope all goes well.

Hannah

the original mri was 20/5 but i am now waiting to hear when they retest him, i will actually phone at the beginning of the week as i will be so upset if i have to go back on the 6week waiting list! i agree all through pregnancy you're told about downs, cerebal palsy etc and although i don't think it makes it in any way easier you do know that there's a chance, whereas i really took for granted that my baby would see, it never even occured to me that he wouldn't! he's my first, is leo your 1st?
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
waiting4babyz@aol.com

good luc with all

Hey,
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?

i'm 27, my oh is actually from egypt. i had thought you seemed to be getting through the tests faster than we were. to be honest the vision teacher is great to have for asking questions but they dont really do anything you cant do yourself. IF it is dvm they say the first things they will notice are lights and shiny things like tinsel, mirrors or cds, also black and white. we actually got a mini disco ball which has been great its striped in colour, reflects and occassionally he gets the glimmers of light all over his face, it was the first thing we got a real response from.you also have to do everything quite slowly, the first thing to happen will be they fix and then gradualy follow, but not smoothely. without knowing much about sight it is difficult because you wonder if its just they sense it or their hearing is so acute they hear it. i've heard its meant to be like a light switch and if dvm one day he'll just see (6-9mth). zachariah looks like he is looking around the room too, i think a way they check for the nystagmus is if you swing him around (they sat on swivel chair with him) and then stop, if his eyes stop it's a good thing and if they wobble or keep moving its not quite so good. (dont know more about it though sorry)
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

Thanks for all the tips, i will try them. I do play with Leo alot, and he impresses me all the time. Im staying hopeful and positive. Im nervous about the ERG but i guess i just want to do it now, so we can take the next step. It must be very stressful having to wait so long for tests in the uk.
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!

good luck with the erg tomorrow, like you said it really is worth it because you may get some answers. not that it makes it any easier! I know what you mean about being hard to take in, zachariah is just the same you wouldn't know anything was wrong unless you actually knew what you were looking for and even then you'd need to be pretty observant. you may find whatever leo has can be reversed or it is dvm in which case it's just a waiting game. i really hope everything goes ok for you and keep strong, i'd love to hear how you get on. thinking of you

ERG went well, still waiting for results but from what ic ould tell, it doesn't seem that Leo is blind or have Lebers congenital amaurosis. Thats good news. Have you been booked for an ERG because apparently its the only test that can really diagnose most vision problems/diseases. Any news on the MRI?
Hope you are well

oh that sounds like fantastic news , i'm so pleased and hope you get some answers soon. is your dr leaning more towards dvm now.
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
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[Modified by: waiting4baby on June 01, 2008 12:16 PM]

Well the not so good news is that i don't think the ERG will come back normal either from what i can see so that kind of rules out dvm which is a bummer. Still hopeful for something positive soon. I hope you get some good news asap and get to stop waiting!

thanks. oh im so sorry, but with any luck anything that does show up is something that can be fixed, and at least once you do find out what the problem is you can then start looking at ways to resolve it or deal with it rather than still be wondering, hmmm is it this/that/ the other! presumably the reason they would come back not normal will be due to the sluggish pupil.
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