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DVM Delayed visual maturation: any helpful advice?



  • hi all

    3boys, i'm glad youve decided to join in and it sounds like your little boy is doing fantastically so congratulations - are you still waiting for mri and erg etc then or have they been written off as not needed? like milos mum said i also wish that zachariah had an older sibilng to 'look out' for him etc. tommy sounds very fortunate, i really hope he continues his brilliant progress.

    tink - hi, glad youve popped over, how is lilly doing? how are you doing? have you sorted out your work dilemna? i have to say i would feel just like you, life is very busy with our little ones needing all the extra support and visits to check on their progress, i am actually not working and although we could probably do with the extra cash we struggle through and i am loving being there to watch my son blossom. i do hope when he is a little older though i manage to find something i can do at home, even if it's just selling bits n pieces online etc. good luck.

    cjk, i am so sorry to hear your boys epilepsy has been so bad recently but like you say it is great that he is now a top priority and with any luck you will get your answers very soon and i pray for you that it is the epileptic blindness, it must be very hard for you right now seeing your little one going through all of this and worrying about getting your hopes up too much about the diagnosis, how are you doing? i have been thinking of you a lot recently as i know you don't get on here much. all the best cjk and fingers crossed =)

    nothing new to report here really, physio were pleased with his progress and he has been discharged woohoo, although should anything pop up i am allowed to phone her directly which is great. we see the opth tomorrow although im not expecting them to tell me anything i dont know already i am looking fwd to hearing what they think.

    good luck with the mri on tuesday lia, zachariah was sedated once which didnt work and aneasthetised the 2nd time which was fine although he was a bit raspy afterwards and its just the waiting thats draining, that and the fasting good luck and thinking of you

    milos mum - i'm not sure if you have tests anymore or if he's just having support now, but i hope milo is doing brilliantly

    hannah how is london? how is leo?

    hope you are all doing well and no doubt we will be catching up again soon =)
  • Hi to all,
    My name is Lydia and I am Mum to Michael (8) who has Down Syndrome and Macgregor who is 6. We were very pleased to give birth to Emily Rose on Nov 17 2008.
    Emily is now 10 weeks old and we were concerned because she wasn't smiling and didn't focus on objects or our faces. We have been to the paediatrician and the next stop is the eye specialist.
    It's been helpful reading your stories on this site although I'm still not sure how worried to be. Am I right in assuming that if it is DVM then Emily will improve by 6-9 months or is that only sometimes?
    Will definitely take on board some of the stimuation ideas such as CD mobiles and black and white objects.
    Having been through a miriad of problems with our son Michael I'm sure we will deal with whatever comes.
  • Hi all!! So sorry I haven't been on here for ages but I've been between SA and UK and have been having serious web issues. Please add me on facebook - Hannah Lake - Network -South Africa.

    I also have a group on there Leo's fight for sight, please feel free to join!

    Chat soon image
  • In response to your question Waiting4baby we have never been all that keen to have the MRI and put Thomas through it, he had been booked to do it twice and it was cancelled both times because of reasons outside of our control. As time goes on we are not sure we will get it as he seems to be developing well in every other respect. We are not sure it will tell us anything. We will talk this over with the opthamologist next month as Thomas's vision has come along way since our last appointment in September. However the nystagmus is prominent and it is hard to tell how well he sees, he definately sees close up but not that far in front of him.

    Hi to everyone, and welcome to the Lydias.

  • hi hannah, i think i've found you but if not please email on my lin k and with any luck we'll track each other down, hope everything is going well with leo and we catch up soon. =)

    hello mumtoem - lydia, wow you certainly sound on top of things, you said you dont know how worried to be and to be honest the one thing i do know with dvm is its a long waiting process so i would say the less you worry the better as it can be so draining. you are right if it is dvm then it should be resolved by 6-9months with extra assistance in getting your little one intersted in things, if you have read though the whole thread you will notice i think with finn3 this was the case, however the rest of us i think it has turned from dvm into uncertainty but if i say so myself i think we are all coping brilliantly and all have incredibly beautiful and well loved children who are doing fantastically in their own ways. emily at only 10 weeks you have a lot of time ahead of you and they say with dvm the first things they are likely to see are shiny objects and black and white things, i would imagine you will have a vision assistant come to you and help come up with ways of working her eyes and i wish you all the best.

    3boys - the mri is scary in thought but they do fine. we actually had it tried twice and so the first time was sedation which had he not woken up wouldnt have been particularly traumatic for him at all, when he woke upit was just like hed had a long nap nothing else, it is the fasting that they have trouble with but ONLY if the mri ends up delayed as actually i found we managed pretty well by giving him everything at the set times and juice for the last bit and distraction. the anaesthetic i think although difficult for you to watch (if you choose to) again isn't too bad as they are gassed just by a hose being held close to them and fall asleep before any tubes or what not are added, i think waking up from that is harder as 'mummy' is not there but you are reunited so quickly they are ok. personally i would rather the mri was done while he is young enough to not really understand what is going on and having now been through it i am more concerned about him having it done at 2, but as you say if thomas is doing so well already there may be no need for it at all, i dont know what they do about nystagmus...... as for the erg thats fine, just difficult for a baby as fer as getting them to stay still. its just a few wires connected to different parts of the brain with a bit of plaster and a light flashed at them, i found just singing to him was enough so should you need it please don't worry. good luck with the opth, i am sure they will be very impressed from what you say

    liavt really hope the mri went well, i have been thinking of you lots today
  • Hello all,

    Joe's MRI went fine today -- he only needed the sedation (instead of the full-on anesthesia). He was a little out of sorts when it was over, but perked right up after a good meal. He's like his mother that way, heh.

    Now we wait for results. They said we'd hear from them within the week -- which almost seems too good to be true, but I'm staying near the phone! They also took his blood to test for genetic disorders, but that will take several weeks.

    Hannah, so good to see you again! I'm going to look you up on Facebook. I hope you have posted some photos of that sweet boy!

    3boys, I completely understand your reservations about the MRI. If Joe didn't have developmental delays along with the nystagmus, we probably would have skipped it too. Our ophth said that if the MRI shows nothing, then it's just congenital nystagmus (or infantile nystagmus, as they seem to be calling it now) and he'll adapt to it as he grows. That seems likely to be the case with Thomas. I have found a helpful site at It's full of parents whose kids have nystagmus, as well as adults who have had it all their life. They are incredibly helpful with all sorts of questions about what kids with nystagmus can do well and what they might have trouble with. Anyway, best of luck to you and do keep us posted after that next appointment!

    Tink27, that site may be of interest to you as well -- there are at least a couple of regulars there who also have albinism. Congratulations, by the way, on your precious girl!

    MumtoEm, welcome! DVM is sort of a "retrospective" diagnosis, meaning that only after the maturation happens can they say for sure that's what it was. It means a long and nervous wait, but the good news is that in most cases it does in fact resolve by 6-9 months so the dr. can confidently say it was DVM. In other cases, it turns out to be diagnosed as something else -- or a bit of a mystery, as you've seen with some of us here! Rest assured that the odds are in favor of your Emily gaining full vision. And if it somehow becomes more complicated than that, you've found the right group for coping! Do keep us posted once you've seen the eye specialist.

    Thinking of all of you!
  • Joe's MRI was normal!

    What a relief, even if does still leave us with a bit of a mystery. I was worried that he had sustained some brain damage from the meconium aspiration at birth, which I would have blamed myself for forever (I stubbornly refused to be induced). Whew!

    Now we wait for the genetic tests ...
  • Oh liavt that is fantastic news I am so pleased for joe, you and your family best wishes for the other tests coming through fast and with nothing but good news image
  • Wonderful news Liavt!! You must be so relieved. Hope all keeps going well.
  • i came across this forum by accident and saw your post (the amount of replies intruiged me) and I just wanted to say what fantastic women you all are - so strong and its so lovely to see how you are all there to support eachother!

    All your LOs sound fantastic and I wish them all the best!

    take care xx xx
  • Thank you brandollarz I think we gave been very lucky to find each other too.

    Milosmom I am loving the new pic you've attatched he looks gorgeous and so grown up now too image

    Hope all are doing well x
  • Thank you brandollarz I think we gave been very lucky to find each other too.

    Milosmom I am loving the new pic you've attatched he looks gorgeous and so grown up now too image

    Hope all are doing well x
  • Hello everybody, long time no news from my side but here I am.
    So my Maia is doing pretty much the same.
    She is now 12 mths old and 2 weeks, but she still cannot sit(only supported) she cannot hold her had very well.
    She developed some kind of epilepsy. So after coming from Germany at the end of August she had 3 times(2weeks distance one from the other) seizures.
    She is now under medication(Depakine and Phenobarbital).
    After all these we started also kinetotherapy. She improved the muscle tone for the legs and for the lower part of the body, but for the upper part(hands and neck) the tone is pretty low.
    She is rolling over and she is trying to do something like crawling but using only the legs with no arms.
    In the last 2 months we noticed also some other behaviours that are pointing to CVI(Cortical Visual Impairment) also known as Delayed Visual Maturation.
    They are : innatentive visualy, light gazing, head shaking horizontaly, visual fatigue.
    It is pretty clear that she is seeing something because she can follows objects, she is able to grab toys after seeing them, she is following with her eyes people arround, etc., ut nevertheless her visual accuity and response are not normal.
    Now we are looking to go in 3-4 months to a new medical check up. the 3rd MRI and other tests.
    The first and 2nd MRI's came clear but if this CVI diagnosis will be confirmed there is a big possibility that she will have additional neurological disorders which can be seen when she is older.

    SO these are my news, not very encouraging but that's it.
    Live with it......this only that we can do.:\(
  • oh claudiuf, i am so sorry to hear your most recent update and hope that you and your family are doing as best you can. the fact she is seeing something and attempting her own style of crawling is wonderful as at least it means she is trying to adapt her own strengths and ignoring her weaknesses. i really hope the drs are able to give you some sort of answers soon as i know the waiting and uncertainty is impossible but, if there is one piece of advice i can give to you, please try as best you can to see through her difficulties and just enjoy your daughter, it really does make things so much easier, i know compared to you i have probably had it easy but focusing on zachariahs lack of sight really got me down but focusing on his crawl or playfulness made it possible to get through all of this for me! maia is now 1 year on and look at all the wonderful things she has achieved that you weren't sure she would and i bet she is so beautiful, our children are so special because they are ours and so loved, good luck with the tests, please look after yourselves and i wish you all the best. thinking of you

    hope everyone else is doing well, thinking of you
  • oh claudif, i'm so sorry to hear that you are going through such difficulties! you are in my thoughts and i very much hope that you can find medications that keep the seizures under control.

    CKJ, also thinking of you and hope that you are having some luck with the diagnosis and that it will be operable. my fingers are crossed.

    also, welcome to both lydias -- i'm so sorry you are also going through this but i hope you both get some answers soon. i understand the desire to stay home from work and spend it with your child. hopefully you will be able to work that out.

    yes, this is a wonderfully supportive group. it has boosted my spirits when i've felt low. i don't check in as much as i used to since milo's diagnosis but am so happy to have "met" everyone here.

    thinking of you all-

    (waiting4baby - thanks for the compliment on milo's pic!)
  • Hello everyone
    Thanks for this really useful and interesting chat. You are all so brave and all have truly beautiful children (love the pics). We are in rather an unusual situation and really could do with your advise. Here it goes...We have two beautiful children who are adopted and were told recently that their birth mum had given birth to another. WE have fantastically been asked if we would like to have that baby join our family. We have not met the baby yet as we still have to be 'approved' to have another child, but have just been informed that there are some concerns with his sight. At a 7 weeks check the foster carer told the medical advisor that he did not appear to be fixing and following with his eyes and did not tend to make eye contact with her when she was feeding - his subsequent examination showed that at 7 weeks he could not fix on an object or follow it - although apparently the examination of the eyes was OK and he is meeting all his other development milestones. As a result he is now waiting for an appointment with the local Ophthalmologist. Because he is 'waiting for adoption' we are assuming that ALL tests will be done asap to rule everything and anything in or out rather than 'waiting' to see if his sight returns (we have been told for 'isolated' DVM it SHOULD return when he is 12-16weeks but could take up to 6m...can it take longer than this????) . We obviously need a complete and full picture of his long term prognosis before we can work out what is best for our family. SO the advise I need from you guys is...what 'list' should we give to Social Services of tests we should be asking for so we can make that decision as soon and a fully informed as possible? The ones I have got from you guys already and other websites are...
    1. Visual Evoked Response (VER, also called a Visual Evoked Potential, VEP) - to ensure that the early visual pathways are intact and functioning.
    2. Electroretinogram (ERG) to assess retinal function
    3. CAT scan or MRI to evaluate brain structures.

    Please help...are their any more tests that can help rule out more serious conditions?

    [Modified by: Minimixn30 on February 13, 2009 07:34 PM]

  • Hello minimixn30, firstly I think you are wonderful to have already adopted 2 siblings and think it is fantastic that you would consider the 3rd.

    To be honest, and I don't think you're going to like this, DVM is all about waiting. Really Dvm should be a diagnosis given only after the child's sight has returned as you can see from all our posts, each of our children were diagnosed with DVM and most are no longer under this category.
    You are right in the tests this little one will need but I think you will be lucky if you can manage to get them very early as the reason we have had to wait is not only that hospitals have long queues it is also because the child's eyes and brain are still developing.
    My son is now 14 months, we were originally told it was DVM but as he is past 9months it is no longer the case and so he is actually undiagnosed. We have had all the tests and his MRI came back normal, however we have been told it may be that something will show up at 2 when he may have another test as his brain will have developed more by then. You will see from other peoples posts that from these 3 tests some have then gone on to have blood tests so that may be something that would need to be added to your list. ? I don't think you are likey to get a full picture of this childs condition unless you wait until he is 2, if it is dvm then from 6-9 months he will be like any other boy. In fact our drs seem to now be waiting until he can tell them himself what he can and cant see! The opthomologist appt will be useful as once they have seen the back of this child's eye they will know if there is something physically wrong with the eyes which would then change the diagnosis.

    My son has visual problems but he is doing fantastically and although I have no -normal' child to compare him to, I really don't think he has caused much of an additional problem. Yes, we have the worry and emotional turmoil, a few hospital appts and house visits, I have to be careful when using loud household appliances, he may require extra attention but he is a lovely, happy, little boy. He eats well, is incredibly nosey, has just started walking and reaching all his milestones to date.

    I hope you don't mind and I apologise if I cause offence but I just wanted to share my thoughts... if this 3rd child had no problems would you have taken him on no question? I don't know the circumstances behind the birth mother giving them up or whether she's likely to go on and have another 5 but I think if you could keep the siblings together it would be wonderful. I am sure your first thought goes to the children you already have, but, I know that one thing I wished for with my son was that he could have had the love and support of an older sibling who would have had the patience to sit and play with him, help him develop and love him unconditionally. Surely the children you have could only love this new addition to your family and to know you took this little one in would just be another wonderful thing you've done. (again, I'm sorry I know it's none of my business)

    I know maybe I have it luckier than some of the mothers on here as to date we have found no other problems with zachariah other than his sight, I know children at this age have so much more to develop that you cannot be certain of the outcome but he really isn't making our life difficult at all, and I'm sre all the other mums on here would back me up on that.

    I hope this helps and best wishes, I hope we hear from you again soon =)

    hope everyone else is doing well, liavt have you had any blood results yet?

    zachariah is fine, i've been told around here all the children go to mainstream regardless of sight, only major disablities dont, he just may need more help but we dont know yet. they're getting me info on a nursery for when he's 2 1/2 which is supposed to just help him along a bit before he goes to the one for age 3 (didn;t really understand so hoping i'll get more details soon)
  • Hello Waiting4Baby
    Thank you so much for all your advise. We have no idea what we are going to do...but in answer to you question...had this not come up YES we would have had him, no questions asked...having said that , we did think long and hard about having a third child (a challenge for ANYONE whatever the circumstances!!!).
    The trouble with the internet info is that it is all slightly conflicting...some say that if the sight returns then the vision is as good as new, others say it never fully recovers...some say the child develops 'normally' if the sight does return, others say that they often have development/behavoural problems, epilesy etc etc. My hubbie and I are quite 'factual' people and we want to know percentages...the question I guess we really want answered is...if it IS DVM and the sight returns at 12-16 weeks...what % of these children go on to lead 'normal' lives? and if they don't, what type of 'challanges' do they face?
    I know it may sound selfish but I think we will only have him if he regains his vision and has a very high chance of developing 'normally' -I don't think that we can or want to cope with a child with special needs. I am not sure if it is a good thing or a bad thing but with Adoption we DO have the choice - if I had given birth to him, then, like all of you, you have to cope? but given the choice....:\? I just don't know - it makes me feel physically sick just thinking about it . We have always said that a third child and a boy was the icing on the instinct at this moment in time is that maybe we should be happy and grateful just having the cake...
    Your little boy sounds wonderful and what a relief that he is meeting all his other milestones - if he continues like that then the world is his oyster. .I was at Uni with a boy who was registered blind and he lived life exactly like the rest of us!
    PS I'll let you know what happens and I hope you get a diagnosis soon.
  • thank you, i would love to hear how you get on. And thank you also for your words on zachariah, even if he doesn't continue to meet his milestones, i KNOW my son will achieve great things because i am never going to treat him as if he has a disability. i know that you need to take a lot of things into consideration but i just want to pick up on your comment about 'special needs' and i can honestly say, hand on heart i dont feel my son has special needs.... i mean i know he has appointments that a sighted child wouldn't need and loud noises scare him, i'm sure he will need extra help in school etc but with all the things that could be wrong with my son i think he got off very lightly and as you say seeing a blind boy at university living a life just like us - it's possible.
    i agree it must be so hard for you to come to a decision as it doesn't have to be thrust upon you, and in that sense you are better off and worse off, better off because you will know from the beginning something is wrong and worse off because you have to struggle with the decisions!
    i think the reason you are finding conflicting advice on DVM is very likely to be as far as i can tell any child whose eyes 'should' be functioning normally (ie all the bits that are meant to be there are etc) are automatically categorised under this one heading.
    if you have read all the posts there has been at least one boy who took the correct path of DVM (FINN3). this is from personal understanding but i think the point about developmental problems is just that if they can't see or cant see properly then the incentive to learn things isn't there,( like lifting head up and crawling etc,) and it's harder to learn, (like you can't see how lips form for words or be shown how to catch a ball through watching etc). As for behavioural i would imagine these are things like certain environments would affect a visually impaired child, like something that relies heavily on vision and this is bound to cause frustration. (this is a personal understanding though and i could well be wrong)
    i just wonder if because of your situation maybe you could see if there was a way you would be allowed to be introduced to children with such 'disabilities' so you know what your letting yourself into so to speak, or, at least see if you could speak to a visual teacher who would be able to put your mind at ease and speak openly about what you're likely to face.
    you know i honestly believe a disability is on the whole only a disability if you make it become one. when i was at school there was a child with a prosthetic arm, he was about 7, and yet he was the coolest kid in the class because he made the best farting noises with this arm, he had no inhibitions, in fact one of his favourite tricks was to shake hands with people who didn't know him and yank his hand off leaving the 'hand shaker' open jawed but he found it hysterical! children have such a wonderful naivity about such things and if your are born with it there's no space for feeling sorry for yourself, you just get on with it and adapt far better than an adult who fals into it. i think its things like this that make me believe my son will be fine and if he's going to be, i have to be too =)

    look after yourself and i really hope you find as much information that you can possibly find on all of this and that this little boy turns out to be ok regardless of your choice. i don't know how long the adoption process is but i do know dvm is a long process, thinking of you and best wishes w4b

    CJK how are you, have you had a diagnosis yet, am thinking of you and wishing you well

  • Hello all!!

    I haven't been on in a while, sorry for that. Over here in England Ive had so many appointments and places to go, things to see...

    I do hope that everyone is doing well and that your gorgeous babes are all thriving!

    Lovely to meet some of you on Facebook, SO nice to see pics of your little ones, they're truly beautiful!

    Minimixn, very interesting to read your story. How great that you have already adopted 2 children. That really is a wonderful thing to do.
    I dont really know what to say to you about the third baby you're considering. Its funny (please dont take this the wrong way), that you would be concerned about what would happen AFTER his vision came back, when that happening would be a huge miracle in itself. Although I completely understand that when given the choice, would anyone want to bring up a VI child?? One of the things I strongly believe about my gorgeous Leo is that if a visually impaired child is to be on earth I am very glad that the job of raising him was entrusted to me.

    Good luck, and I hope it all turns out well for you and the little boy.

    Leo is doing WONDERFULLY, my gosh he amazes me everyday!

    We finally have a vison teacher coming on Monday, cant wait for that.

    We have had so much support since I ve been here its great.
    I have to tell you all, GO TO MOORFIELDS!! It was an amazing experience and the support and services that have come from our visit have been outstanding. Honestly I would really recommend asking for a referral. Especially Waiting4baby, they are so great and knowledgable there, maybe they'll help you get closer to a diagnosis.

    Anyways, got to go. Really hope your all doing ok, and if not strength to you. We have THE best babies in the worldimage

    Take care, and those of you on fb, see you there!
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