Forum home Toddlers & older children Children with special needs

DVM Delayed visual maturation: any helpful advice?



  • hi cjk, i'm glad i've helped but i am sure as each day passes you will all find yourselves feeling more and more positive.
    i definitely feel zachariah communicates with me, i have no idea what children with perfect vision are like and it has been more and more obvious over the last month but he smiles a lot when spoken to, (laughing tends to be reserved for tickles only and very rare) he is beginning to understand words like breakfast, lunch, dinner, nappy, dummy, zachariah, give me your fingers (i say this when pulling him up) basicallly i've found by being repetitive and aways using the same word for each action he is slowly beginning to pick up what they are. of course i may discover it's all to do with the pitch i say them but i'm pretty sure it's not as he knows what he wants. his ears will prick up if he hears myself or his daddy and he sort of stops still if theres a lot of noise going on around him, nosey in his own little way heehee!
    i dp things like the song head/shoulders/knees etc with him and touch each part and this gets a reaction as when we get to mouth he prepares to grab my hand and eat it. Counting has worked well whether it's poppers on clothes or countdown to arriving outside our door/food time etc. he's not able to point for what he wants obviously but by asking him words he hears a lot i do tend to get a smile for the right one or a heh heh noise and jumping on his little legs whilst being held. of course i could be making my son out to be some kind of genius and it's all in my head but i do feel we are getting somewhere. he is however a very fussy baby, hates being left alone (especially me leaving him) wont go near the bath we have to do bed bath and flannels, he cries his little heart out when we go somewhere that he doesn't know, especially if it's noisy but by being calm with him and accepting not everything is going to be 'normal' we do ok.

    i feel like i've written far too much in my last few posts so apologies i just keep babbling as i know for me i wanted as much information or anthing i could relate to as possible.

    hope i've answered all your qns, feel free to ask more and if i've missed one i'll try to get back to it.

  • ooh the talking/response thing. i don't tend to get a response just a look. zachariah has this thing where his head tends to be tilted to one side and he 'looks' out of the corner of his eyes, no idea why, i put it down to him being vertex and stuck but drs say unlikely!
    however if i make cooing sounds he tends to copy them and generally they are the same pitch but not always and he loves it if we do it in reverse and when he makes noises i copy him.
    tbh though a lot of this is things that have improved over the last month so although we all put a lot down to their sight some of it is that they're just not old enough. i am forever paranoid about what he should or shouldnt be doing because you cant help but wonder if its their sight holding them back but most of the time its just i'm expecting too much :roll:tsk
  • Hi all,
    We went to the eye hospital today. The drs checked Williams vision using the black and white boards and he followed the majority of them but was slow in following them.
    When the dr shone the light in his eyes and moved it he turned to it a little but I don't know if that was a coincidence or not.
    They dilated his pupils and said that everything looks normal. We have to go back in November.
    At least they still think its DVM.
    Joanne and Brood, do all of your children go to the eye hospital? have they had/ got DVM?
    Claudiuf, thanks for your comments. Its good that your baby is wanting to stand.
    CJK and Waiting for baby- thanks so much for being positive. Your babies are lucky to have you as their mummies.

    [Modified by: ahh on September 05, 2008 07:52 PM]

  • ahh, that all sounds REALLY good, we've been going for months now and zachariah has never taken any notice to the black and white boards, and only once tracked the light but the guy was talking and hadn't realised (but i know he was it went along the lines of ' now lets see if you can follow this, ah ha!' lol.)
    i think it can only be positive that there is already some sort of vision there, although i think zachariah has improved he hasn't met this stage yet. so congratulations and i really hope he continues to improve. take care of yourselves, thinking of you.

    leos mummy/hannah: how are you doing, any news of you getting to the uk yet? and how is leo doing with his glasses, i would imagine you have seen a real change in him now.
  • Hi, I've read this forum with great interest as my baby has just been diagnosed with DVM. We've been to the pediatric opthamologist and he said that everything is normal with the eye except for a sluggish dialation. He does not thing it is Leber's. However, since Milo was only 6 and a half weeks at the time (he is now 8 weeks) the doctor wanted us to wait 2 months and then come back for reevaluation -- at that point if there is no change he will do an ERG and an MRI. We have also had an EEG done because his eyes do wander and shake sometimes and our regular pediatrician was concerned that it might be seizures. Fortunately brain waves were normal so hopefully it is just DVM. The opth did not see nystagmus but his eyes definitely shake and move weirdly sometimes -- i don't know if that just has to do with the immature system or if it's possible that he missed the nystagmus. Hopefully we will find out more at the next appt in Oct. But it is sooooo hard to wait.

    Your group seems so wonderful and supportive and it seems like the only place to turn. I am having such a hard time dealing with this although i try to remain optimistic. It seems like bizarre things just keep happening to us -- following my labor i was unable to walk for about a month because i had compressed the nerves in my legs during the pushing phase. It was also strange and no one seemed to know what it was, and just as I recovered from that we've been hit by this. My husband says that I just need to stop worrying and that all will be fine but it is so very hard and my heart is breaking.
  • Hello everybody and welcome to Milosmum!
    So nice to read all your updates, especially nice to see waiting4baby is back and glad that Zachariah is doing well.
    As for my Leo, he is doing great. He is sitting alone. although he does fall over after a while!He has just started to roll from back to front which Im really proud of because ive been waiting for that! He's also eating well and talks all the time, recently adding ba ba ba and da da da to his vocab.
    The glasses do seen to make some difference but I dont make him wear them all the time as they irritate him and he grabs them and tries to eat
    Stil waiting for his passports so we can bring him over. Also think Im going to wait to get the results of the genetic tests that we had to find out which gene strain of Leber's he has (if any...). That should take another 1-2 months as they have to go to Estonia.
    Its very interesting to hear everyones stories. Milosmum, how old is your little one now? Its seem very young to have the EEg done, when Leo had his at about 3 months they told us not to read into the results too much as they change over time. After DVM, Leber's really is probably a good result opinion because they are doing effective clinical trials as we speak. As with milosmum it is the sluggish pupil reaction that concers the doctor, making the clinical signs different to most of you on here.
    As with waiting4baby we are positive and try to just make the most of all the wondeful things Leo can do. He smiles laughs and babbles all the time and is such a happy content baby. We have to rememeber that he knows no different. All of this doesn't mean that its not hard everyday and that we are not to be sad about it but as claudiuf says all we can do is love them as we are doing!
    It would be great if we could all get together at some point, hopefully when im over in the uk. Our gorgeous ones could meet which would be lovely.
    Anyways keep updating on here, it really is helpful to hear what everybody else is doing.

    You are all in my thoughts and keep doing what your doing with your lovely little ones.

    Take care
  • Hannah, thank you so much for the welcome. It does help to know that there are others in the same boat. Although our stories aren't exactly the same it is comforting to know that others are going through something similar as this is such a strange situation to be in. Milo is 8 and a half weeks old and we got the diagnosis at about 6.5 weeks. We live in Brooklyn. It seems like most of you are from England. My brother may soon be moving to London for his job so hopefully I will be able to visit at some point.

    Hannah, they did the EEG specifically to rule out the possibility of seizures or epilepsy -- my dr. thought that might be the cause of the trouble with his eyes but fortunately doesn't seem to be. It was not fun though -- they hooked Milo up to the electrodes and videotaped him for 24 hours. He was fine but uncomfortable I think, as was I since I had to breastfeed him and hold him and sleep the night in the tiny uncomfortable hospital chair. Was this your experience with the EEG as well? Did they want to rule out spasms or was it just to check brainwaves? I don't know if it has any other diagnostic usefulness in terms of DVM but let me know if you know more -- it sounds like everyone here has far more info on this than I do.

    I have to say that everyone is so wonderful and positive on this forum that it gives me strength. Of course we all just love our babies but I pray for all of us that one day our children will be able to see.

    I started out the day feeling really down as it was dark and rainy. I felt like there was no way to get through this and it sat heavy on my heart. But then Milo had a day of many smiles (still few and far between) and my spirits soared...I just love my little boy so much no matter what cards fate has dealt us.

    Best wishes to all...
  • Hi all, welcome to Milos mum.

    It seems that most of you have had ERGs carried out. William is 5 months old now and still hasn't had one. We have to go back to the hospital in November for another check up so it won't even be done then. I know that the later they are carried out the more reliable the test. I will push for one when I go in November. I'm just hoping that he will have made some progress by then.
    I would love to meet up one weekend, I am in Manchester and would meet half way/ travel to meet up.

  • Milosmum, I think I may have got confused between the EEg and ERG...:\? Leo had an ERG test where the electrodes are stuck all over his head and then light was flashed in front if him. Your EEg experience sounds like it was really hard. When we had the ERG I was also breastfeeding I know how hard that was between all the wires, so for 24 hours must have been a real struggle. Im sure it was worth it though as the results ruled out brain problems.
    Our stories are all varied but with lots of similarities and I also get strength from everyone on here. It will be interesting following all the progress that we all make with our little ones over time. I live in South Africa, but am planning a trip to Moorfields in England in the next couple of months.

    Hope you are all well,
    Take care
  • Hi all,
    Thought I'd tell everyone about some resources I use with William. I recently bought some jingle bells that you strap around the wrist/ ankles. He seems to react when he hears them. I bought them from Mothercare. I have also got a black and white mobile and a black and white playmat both from Hope this of some use to you all.
    Has anyone else got any good tips for stimulating the babies?
  • Hi Joanne and Brood,
    I went to a toddler group for visually impaired babies and toddlers on Thursday. It was at Henshaws Resource Centre in Old Trafford 10-12noon. I found it to be quite helpful in meeting other mums and sharing experiences. Have you ever been? I'm sure you would be very welcome if you wanted to pop along. It was a bit of a treck for me as I live in Stockport but worth the journey.
    Thanks for the website address, I will have a look at it.
  • I'm just wondering -- it sounds like your babies are cooing and babbling a lot. When did they start to do that? Milo is two months and he makes little noises but not a ton. Also, he smiles sometimes but I can't tell if it's in response to something we've done or our voices or if it's just random. Just wondering what your experiences were when your babies were about 2 months since I figure the blindness does affect other things as well.

    Oh, another thing -- Milo hates tummy time. His neck seems to be getting stronger but when I put him on his stomach he usually just fusses and I can't get him to lift his neck much. I'm wondering if this has to do with the fact that I can't make it interesting for him by distracting him with visual stimulus so he will lift his head.

    Joanne & Brood, you said that some of your children have DVM. When they got their vision back did it come in gradually or was it all at once?

    Sorry for all the questions but it seems like this is the only place that I've found real people dealing with the same thing.

    Hope all is well with everyone and that the new toys for stimulation are helping -- I am going to check out those websites, although since I am in the U.S. may not be able to order.
  • Hi Milosmom,

    Hope you are well.
    Its funny because I cant really remember much about that time (Leo's 2nd month), because thats when all the diagnosis' and tests were being done. I do rememeber taht at about 5 weeks Leo started smiling in response to being talked to. At the time I thought it cant be real smiles because his head was always facing one side or rthe other, never at your face.
    Leo must of starting babbling at about 3 months or so. Noises that sound like little screams were the first. Now he has started with mmmm and da, but it doesnt mean anything. Just him experimenting with his voice. He also has been making noises like when you blow a raspberry all the time now, getting louder and louder, which is really funny.
    As far as tummy time, Leo has also always seemed not to like it. He has a very strong head and neck but doesn't yet push up on straight arms. He started holding his weight on his fore arms at about 5 months I think. He's recently been able to roll from his back to his tummy, so it must be more appealing these days to be on his front. It is hard to motivate them if they cant see but using noisy things/toys seems to help or getting right down there in front of him and talking to him.
    I hope this answer some of your questions from my experience. Whatever happens rememeber that ALL babies are different, sighted or not. It can be very difficult in the beginning (and even now!), to not be comparing your baby with all the others you see. I have spoken to mothers of other visually impaired children, and some did things excactly as the 'normal' chart says and some different, so try not to worry. I say have them be babies for as long as possible!lol.


  • Finn went to see the Moorfields clinic at our local hospital today. As we thought he has really improved and they think he has almost caught up to where he should be.

    They still have some concerns about long-sightedness but he's going to be fine. Its great news and we are so lucky. I can remember how low we felt when he was 3 months old and we started to realise there could be a problem.

    His sight started with black and white patterns. It improved slowly at first and then before you knew it he could watch faces. He is such a smiley chap now.

    I wish everyone well on the thread. It was good to feel part of a community and get support from people who are dealing with problems far worse than ours.

  • Wow! Thats amazing news Richard. Congratulations and all the best for the future. So happy for you and your family, I can only imagine how you must be feeling.
  • Richard,
    I am so happy for you. It must be such a relief to know everything is going to be ok. I will read your previous posts on the forum to learn about your experiences. Thanks for letting us all know.
  • hello everyone, still no permanent internet here but am catching up with you all as and when i can.

    Milos mum hello, i am so sorry to hear of yet another one going through this. it is still very early days for you though and so i really wouldn't be worried about him not making much sounds yet, as hannah said all children develop at different ages. i don't remember exactly how far along zachariah was before he communicated but it really did take a long time and even now at 9.5 months he still cant make any 'ba' 'ma' 'da' sounds but certainly looks as though he's going to be a right little talker when he gets his tongue. they say sight willl delay the speech but nothing is a certainty. Also he absolutely hated tummy time and i didn't push it, now he has now problem with it although this is because he is beginning to crawl, no amount of visual stimulation ever helped with this at all, although i'm not saying it wouldn't for you.
    Ahh, we had an erg very late so i wouldn't worry that you have not had one yet, i think it was only last month we had ours, they do say the older the child is the more reliable, so i would agree that by november you should ask but not worry too much that it's not happened yet.
    Finn3 wow, congratulations, i'm so glad all is well with you, i have to say when you said about laughing in the mirror i'd thought it sounded good, i am so pleased to hear some good news on here.
    leos mum i'm really glad all is going well with you too.

    Well, update on zachariah: we have reached a dead end, basically the drs have said there are no more tests they can do, they can't see why he has a problem and they hope that over time it will develop so will keep an eye on him! in the mean time i can choose to go for a 2nd opinion somewhere else, i am waiting to hear where but am going to try and push for moorfields. i am wondering though why we have never had any mention of lebers or genetic test done for him, does anyone know if this would be because he doesn't have the nystagmus or problems with supporting his neck?

    the good news is they've said he definitely hasn't digressed. the erg came back normal although his response time for eye to back of brain was slow (they say could well be linked with delay and improve in synch with visual development)

    i am getting more and more confused with whether he can see or not as he is constantly reaching out to grab things now and usually gets them spot on although does sometimes reach out in search of somethihng with no luck. i am beginning to wonder if he can see from the corner of his eye as this has been his preferred pose since birth. they say he definitely isn't blind but have no idea what he can see whether it's shadows/blurs/objects who knows, speak zachariah speak lol!

    i noticed people had mentioned helpful toys etc and though i would add something i got which zachariah loved was one of these chime toys you clip onto your pram as it wuld jangle when we moved and then when he flapped his arms about it would make noise too. we tried it in the shop and he just stoppped in his tracks looking amused. it was only from asda no more than ??????3 i think it was a bright starts toy, will try and see if i can find a link later. Also in the early days we had one of those winnie the pooh toys sleeping on a musical pillow which had lights shining, that was great for soothing him to sleep.

    sorry another essay! good luck to all of you and keep your spirits high i think all our children are doing brilliantly, thinking of you all, best wishes image
  • First of all, that is such wonderful news about your baby Richard! It gives hope -- I am so pleased for you and your family.

    Hannah and waiting4baby thanks so much for your input on your little ones at 2 months. I feel much better today. Yesterday Milo had his regular 2 month checkup with the pediatrician and she said that he appears to be completely neurologically normal for his age. His neck lifting was good as well as muscle tone and even made a few of his regular little cooing noises and she said he was on track. Plus, today, he has been very smiley and as talkative as he has ever been. So I feel very reassured and thank you for your advice. You're right, babies all go at different rates -- as if I need something else to worry about!!

    waiting4baby don't give up hope -- you must have come across the same research as I have when looking up DVM. It can definitely take longer than 9 months -- particularly since the whole thing is a mystery to most doctors. It might be worth asking your doc about Leber's. As Hannah mentioned there are a lot of clinical trials going on for that so it might be worth checking into. But it doesn't sound as if Zachariah's other symptoms fit. For Milo he has sluggish pupillary response and possibly nystagmus but the opth still didn't think Leber's (said something about some eye function being a 4 with Milo and with Leber's it's usually an 8). But I feel like LCA is a real possibility for us and hopefully I will learn more when we get further tests at the end of October. Frankly, at this point I could handle a diagnosis of Leber's. It is terrible to think about, but I have imagined so many worse things -- Milo can still lead a rich and rewarding life even with blindness.

    I am glad to have heard some good news on this board, though, and very much hope we'll be on a streak. I pray for all of your babies as well as my own.

  • Hi all. Richard - I'm so happy for you and your family. I wish you all the best for the future.

    Waiting4baby - it seems that we are almost in the same situation although we still have the MRI in front of us. Tuesday Sep 23 we will have it done hopefully and I dread it. Our son is now 8 months, has done VEP, ERG and the doctors have concluded that nothing is wrong with his eyes. When we did the ERG I asked about Leber's. And the doctor then said that it can't be Leber's when the ERG is normal; ie the retina works fine. So Waiting4baby - it can hardly be Leber's, can it?

    Last week we had his hearing checked up and it was normal which was a great relief. But still I wish he would communicate more. Most of the time he is quiet, content, his thumb in his mouth, looking like he is in his own world. He does not really react to sounds and he is not very interesting in exploring things with his hands. He sometimes makes happy noises but they have been the same for months. He doesn't seem interested in experimenting with his voice at all. He still can't sit without support, he hasn't begun to crawl...

    Basically, all he does is: lie on a blanket on his stomach, sometimes head up for a long time, lie on his back, sit in a bumbo chair or baby chair without doing anything, sleep, or he is in our arms, cuddling up with his thumb in his mouth. He can roll over but doesn't seem to se the point with it.

    Sorry for sounding negative but I feel like nothing ever happens with our son. He is just growing, nothing else. I feel like I don't know him at all since he doesn't show any interest in anything. He is like Ferdinand the Bullimage

  • Thought this might be of interest to you. Some of these babies were around 9 months, there's plenty of time for most of you. Delayed Visual Maturations in Infancy.pdf
Sign In or Register to comment.

Featured Discussions