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DVM Delayed visual maturation: any helpful advice?

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  • Lia, one other thing you might want to do since your are in the US is get started with Early Intervention. Regardless of whether Joe's vision problems continue or not, it will help now -- and the process can sometimes take awhile so you might as well get started. If it turns out that Joe doesn't need it because he's regained his vision there's no harm in having set it up. I think in almost all states of the US it is free regardless of whether or not you have insurance.

    In addition to vision services Early Intervention also provides physical therapists to help with motor skills as babies who are low vision often need a little extra help exploring their environment (makes sense). I got a referral a few months ago when Milo had the DVM diagnosis and the services should be starting soon -- I am so glad I started the process because in our situation we will continue to need the therapy. For us it seemed to take a particularly long time but I think that most other people that I've talked to haven't had to wait as long.

    As I said, I think most of the delays you are talking about sound pretty minor and can be headed off with Early Intervention.

    Just thinking of you and hope you are feeling better today.
  • Thanks so much, you guys. I am so grateful to have found this forum.

    I am feeling much better today. Yesterday I came home with a very bleak idea of what the future held, but I'm feeling much more optimistic now. I think he just needs a little more help than I can give him in order to get caught up. But even if this vision loss is permanent, even if he has some significant delays ... it's going to be fine. He's a happy kid and his family loves him. That's all that matters.

    I did make a phone call to our local Early Intervention office -- thank you for that advice! We should have an evaluation in the next few weeks.

    Thanks again.
  • really glad you are getting things into perspective lia that early intervention thing sounds great. absolutely our children are certainly not lacking in love and lets be honest from what i can see they're beautiful too. heehee.

    look after yourselves and make sure you keep us updated.

    ahh/cjk/claudiuf : how are you al, it's been a while since we've heard from any of you. really hope things are going ok with you and your little ones are shining through =)

  • Lia, glad you are feeling better. I was looking up some info for my own reference and ran across this from blindchildren.org

    "Much of the literature on the development of blind babies states that they are delayed in pushing up on their arms in the prone position (on the belly) as much as six months compared to sighted babies."

    Milo also is not really pushing up and I was looking for ways to help him do it more. But he's really coming along in so many other ways -- he can sit supported (but only for a few seconds) by holding himself up with his hands and he has started standing really well when I pull him up in my lap. I am so happy because this seems pretty normal for 5 months, which he is today. He shows no interest in rolling over from his back to front but I imagine that will take awhile longer as everyone seems to say.

    Anyway, we had such a slow go of it in terms of the early motor skills that I am so happy and just wanted to share! We are so proud of our little guy.
  • Well done Milo that sounds fantastic and by the way what a GORGEOUS picture. really hope he continues to progress well, it sounds like you're doing a fantastic job, what a lovely gift for christmas image
  • Hurray, Milo! It sounds like he's doing beautifully.

    We had our second visit with the pediatric ophthalmologist today. He's still calling it DVM but was concerned that the nystagmus Joe had two months ago is now more pronounced, as is the crossing of his left eye. He also has astigmatism and nearsightedness, which are making whatever he does (or would) see blurry.

    The doctor thinks maybe making that blurry view a little clearer will stop the brain from making his eyes cross and wiggle, so he prescribed glasses. He said not to expect miracles from it, but that it may eventually bring everything into focus. At the very least, it will keep me from having to explain to strangers that he has a vision problem!

    He looked adorable in the sample pair we tried on him -- his own pair will be ready later this week.

    The doctor did order an MRI and I hope to have that done by the time we see a neurologist on Jan. 15. It makes me very nervous that the eye symptoms have gotten worse and I wonder what we'll find -- but it will be nice to have some information.


    [Modified by: liavt on December 17, 2008 11:33 PM]

  • hi lia, hope you and your family are well. great news to hear they think glasses may help joe a bit. does he have them now? how is he/you finding them. fingers crossed you get the mri done asap. i know it's not much fun but at least once it's done you'll hopefully have a few more answers.

    hope everyone else is well and looking forward to the Christmas celebrations, i know i am and although zachariah is no different visually he is coming along brilliantly, we had another hearing test, they say it's fine but they want to continue monitoring him every couple of months (!?) i'm not sure i see the point as far as his hearing goes but i guess at least they're making sure he's ok. i am not seeing the opth again until late january and i am looking forward to seeing what they say about his progress so far, i also might try and find out if they have a clue as to whether i'll be able to put him in mainstream school or i should start hunting for some sort of special assistance ones.

    happy christmas all x
  • Hi all. It's been a while since I've been here since my son unfortunately has developed epilepsy...
    It's been going on for about a month I think, but who knows, maybe he's had it all the time without our knowledge. There are so many different kinds. He is taking medicin now but he still gets seizures every night, although not as dramatic.

    So we feel low low. He is a very passive child, no talking, no communication really and he doesn't show any interest in toys or sounds or people or anything really. Except for standing up when we hold on to his hands. That he seems to like a lot.

    The doctors still have no idea what causes his lack of vision and the epilepsy and they've taken all kinds of tests - chromosomes, metabolic disorders etc. But it seems pretty clear to me that something is not right with his brain if he is passive, blind and has epilepsy.

    Sorry about this negative reply.... I'd better go to bed so I feel better tomorrow. Every other day is low, every other day is better.
  • CJK I am so sorry to hear your news. Are there other medications you can use to try to get the seizures under control? Does your doctor know what kind of seizures they are? I really hope that you get some answers and that you can find the right medication -- I have read that if you catch it early and can find a way to stop the seizures then that is really positive. This was one of the things that our doctors were looking at in Milo's case as well.

    I'm sorry you are so down and I understand in a way how you are feeling. Our diagnosis of Leber's was different but also devastating. But time does help, and you have to allow yourself to grieve and get through it. I hope that you have friends/family that you can lean on during this time to help you through. And if you ever just want to vent or have an outlet please feel free to contact me at [email protected]

    I am thinking of you.
  • oh CJK i am so sorry to hear that your sons case has become more difficult and really hope like jodi says you have a good support network around you, and if you do want to get in touch outside of this thread feel free to email me by clicking on the email tab under this message. i know all the drs will constantly be asking how you think your son is doing but please make sure you let one of them know how you are doing. they may be able to help you find other families going through similar problems so like on here you would be able to befriend people who truly understand the heartache. i know this may not help much but please remember that just because everything looks linked you may find that each is individual. eg his movement may well be purely down to his vision and nothing else. please look after youself and you and your family will be in our thoughts and prayers x
  • hello everyone,

    how was you're christmass? I hope you all enjoyed it.
    The days before christmass whe went to EuroDisney. What a great 4 days! Everything is s?????? beautifull, s?????? fairylike with music and christmasstrees all around. It really brightens up your day.
    Whe cam home on Christmasseve and spent the past two days at home, resting and celebrating christmass.
    Terra and Ravi had the best time ever and Kamil was doing wonderfull. He is s?????? verry sweet.

    Since my last post much have happenden as whe may have found the cause of Kamil's problems. Whe think he has a syndrome called Mowat Wilson Syndrome. His blood has been send to Germanny to test for it. Whe'll get the results in a few months. If he has this syndrome this means he deffinitly is mentally challenged (could be servere). He could also have epilepsy (but shows no singns of it yet). It could also mean that he has heartproblems, he will get an echo for it (they don't think he has though, just to make sure)
    Eventhough it's really a servere condition (there's a whole list of problems he could be having, some whe're sure he has not, some he has alreaddy, some we don't know just yet) I am really alright with it. I'm not scared of having an dissabled child. I really believe I can give him a happy and meaningfull life. And I love him so verry much that he will be perfect to me anyway. Luckily my husband and other two childeren feel the same about him. He's loved so much. And he's doing really well.
    Whe also know that the operation will be in February.
    In the mean time whe have started a visual stimulation program. Whe know now he can see something and that the problem is a neurological one. This means the visual information does not gets proccessed in the right way. Whe hope whe can improve this. What's really funny is that he see's when whe hold his nipple, his bottle or something to eat in front of him. He immediattely opens his mouth and leans foreward, smart boy image

    I hope everyone is doing well.
    CJK, I hope you're pulling through. Thinking of you!
    Lia, don't worry too much as nothing is sure yet. It could be fine.

    Love, Marieke
  • marieke, i'm sorry to hear the theories of kamils diagnosis and wish you all the best for the results and operation etc. it sounds lke you are prepared for the worst and from what you've written you and your family are coping brilliantly. what a clever boy to be able to find his bottle and things, i guess everything is small steps but each is a wonderful achievment.

    thinking of you and your family. take care.
    i'm glad you had a lovely christmas, it sounds fantastic. we had a really lovely time too, i hadn't expected zachariah to take much in this year but i guess he just bounced off the rest of us as he was having a whale of a time, happy, never sleeping, always playing, just a joy to watch.

    would anyone be interested in facebook here? i know we are all pretty private but it would be lovely to 'meet' you all. if you would like to please email me your name and i'll try to find you or ask me for mine a(through email though as i don't want to put it on here!) and you can search for me =)

    happy christmas and hope you all have a wonderful new year. i think for all of us in particular we are probably glad to see the back of 2008 and i wish all of you a beautiful 2009 with happy children and no more long waits for answers x
  • CJK, I hope things are looking up for you now. I think everyone here has experienced "low" days where it all seems beyond hope. But then there seem to be great days that make you wonder why you were ever so sad about it. I'm hoping you have more of those kinds of days. As others have said, with the right treatment things may turn out much better than you'd hoped. I've known adults with epilepsy who had very scary starts but went on to do fine. I wish that for your little one!

    Marieke, I am sorry to hear about the diagnosis you're expecting, but it must be some relief to have an answer on the way. It sounds like Kamil has a wonderful family and is learning about his environment so he's off to a great start!

    Joe is getting used to his glasses. He still doesn't appear to see much, but he gets lots of attention from strangers when we go out! It's nice for me too, because I don't have to explain to people that he has a vision problem -- little old ladies used to get all bent out of shape when he didn't look at them and smile! He still has the nystagmus, but his eyes do seem to cross less than they used to. We see a neurologist on Jan. 15 about the milestones he's missing, and then his MRI is on Jan. 27. I hope that we'll have some kind of an answer and a plan of action by February.

    We spent Christmas with my parents, who were able to point out progress he's made -- which we sometimes don't notice because we see him every day. He's much "chattier" now, lots of babbling and yelling, and he appears to look around more, although we're not sure what he's seeing when he does. He is very much enjoying his new routine of solid foods, with a special love for bananas! Still no interest in toys or pushing up/rolling over, and while he does stare at faces he doesn't smile back, but we hope the neuro will have some insight on all those things.

    Waiting4baby, I'm on Facebook and would love to see you there! I'll email you my info.

    I wish everyone a very happy new year, full of good news and great progress for our little ones. Imagine what they'll be up to this time next year!
  • Lia I can't believe people would get upsetvover a baby not responding, how rude! When people are obviously trying to get zachariah's attention I would just ignore them, I guess a lot of the time with him it looked like he was fascinated with something else though as his eyes would look to the side(?) glad the glasses have made some difference even if atm it's just to tell people to back off, but it must have been great to hear from your family that they can see progress. It is certainly more obvious to people who aren't around all the time. Really wishing youluck with neuro and MRI. It may be worth writing all your qn down as I know when I go I get distracted by everything and then remember things I'd wanted to say after I've left.

    Hannah/Leo mummy how are you? How is moorfields , hope you are doing well and that Leo continues to do brilliantly
  • We're back from the neurologist. Joe is "delayed" in 6 of 7 categories (the one good one was basically eating/sleeping -- he does enjoy those!)

    She characterized his muscle tone as "medium" rather than "low," and really only in his trunk and neck. Low enough to cause some delays (obviously!) but not so low that she'd expect long-lasting problems out of it.

    She was concerned about the same things we are -- the lack of interaction (like a social smile), the indifference to toys, not pulling his head up when prone, etc.

    And of course, his vision. His eyes are quite wobbly still, and he can't seem to make out anything more than a few inches away.

    She said delays like his can be caused by a brain abnormality, a genetic disorder or a metabolic disorder. Or, they can have no apparent cause and resolve on their own. I asked her which of these was most likely to explain Joe's situation, and she said it's impossible to say without investigating. So they'll take blood and urine samples on the same day as the MRI (Jan. 27), to test for those other possibilities. And we'll wring our hands until we have an answer.

    It's strange. A few months ago, we thought his eyes were the only problem -- and I was devastated. Now, it seems like low vision is just ONE of his problems -- and I feel fine! Whatever the diagnosis, he is making steady progress, seems quite content, and is just the light of our lives. We might have to adjust our plans a bit, but it's going to be OK.

    It's been lovely "meeting" Milo and Zachariah's moms on Facebook -- if any of you others can join us there, please do! (I love to ogle other people's baby photos almost as much as my own!)
  • Hi Lia,

    i am sorry to hear they think he is delayed but it does sound good that muscle tone is only at medium and not low. they do say vision will make everything delayed so i personally would say there was still hope in that matter.
    i can't remember exactly how old joe is now and i know im not the specialist and not met joe so i reallty am only saying from my experience, but no social smile and interaction with toys for us was very normal, in fact it is only in the last month that he actually smiled at a woman pulling faces at him in his pushchair and he's 1!(i could have cried at the enormity of it)... the toy interaction i'd worried about for ages, i felt he should be playing the piano, riding his car and building the eiffel tower lol, but when i spoke to mums whose babies were born the same time as zachariah on here, i found that actually their babies didnt do much either, just they would reach out for them. but now they're all older i don't think he's the same as the others with toys as i wil hear stories about things being hidden in the car seats etc and zachariah has only just started showing interest in toys and it really is just to eat them! the only thing we did manage to do with him though was a rattle and it was only for a minute maybe but he'd enjoy bashing it after we'd shown him how.

    it is fantastic that you feel you can cope now whatever the outcome, i think in one sense thats where we've all been lucky, we have such a waiting game it also gives us time to get over the shock and begin preparing. our babies really are so special and just watching how well they are progressing and how happy they are just makes us so proud. i really do believe in most cases disability is only a disability if you make it one and i think all our children are doing fantastically well. good luck with all the tests we'll be thinking of you and i really hope the results dont take too long to come through for you. joe will be fine, because you areimage

    zachariah has had a nasty bug this week so we've had to cancel his physio assessment but will be having it later in the month, and we have the opth again on 26th jan. i'm not expecting much as we've been told it is a waiting game until around 18month - 2yrs when they may carry out another mri. i'm hoping i'll get to find out about whether they think he'll be ok for mainstream school or not (or maybe this is something else i have to wait for) and have been a bit worried as when he was very ill on sundy it was like he couldnt see at all, to me the idea of cerbral visual impairment now sounds quite likely from everything ive understood about it (quite limited tbh)

    hope everyone else is doing well, ahh, cjk, claudiuf, leosmummy how are you all doing, how are the little ones, please stay strong and i hope we're not hearing from you purely because you are all having wonderful times jut enjoying your babies. leosmummy/hannah, i'd love to hear how its been going for yhou in moorfields and cjk i hope you have had more answers about the epilepsy ..thinking of you all and like liavt said it would be lovely if any of you would like to 'meet' on facebook as it's been nice to see how wonderfully our little ones are doing and just to humanise us a bit, drop me an email if youre intersted and i can link us all up

    take care everyone
  • I have been reading this thread since May and have been following all of your stories. I was always planning to contribute once we had more of an understanding about our son's situation. We still do not really have that greater understanding but here is our story to date...

    Tommy was born in April and from around the 4 week mark we became concerned as it was quite obvious he wasn't making eye contact or even flinching when you startled him. We got into see a paediatric opthamologist soon after this who outlined a number of options including delayed visual maturation and some another much more serious possibilites. It was after this appointment that I googled DVM and came across this website. Tommy's eyes then started roving around which seemed to us as though he was trying to see but then from 9 weeks of age this roving movement developed into a more pendular jerky movement. We then went back to the opthamologist who told us that he had nystagmus, and it wasn't a very positive appointment as the much more serious possibilities were now being looked at because of this and the fact he had no visual acuity.

    We had our MRI and ERG tests cancelled twice for different reasons, so I have nothing to report here but from 14 weeks of age Tommy started to intermittently follow black & white objects. It seemed to take forever to get a social smile from him and often we put it down to a coincidence and he wasn't really smiling at us. From around the 20 weeks stage he was actively reaching out for toys and following them back and forward and social smiling.:\) He is now 9 months old and the nystagmus is still prevalent and we are not sure just what he can see but we know he can see close up but he doesn't seem to see that far infront of him. He started crawling on Christmas Day and he crawled over to his brother and pulled the colouring pen out of his hand with great precision. He is picking up small items off the "busy" persian rugs and seems to be able to pick up the smallest items of food from the highchair tray. I thought we might get more of an idea of his visual acuity now he is crawling but it is still hard to tell and once again this will be a waiting game. We have another opthamologist appointment next month.

    I apologise for the lengthy account but I have been greatful to have been able to share in your stories and I know what it is like when you are trying to get further information and personal accounts really do help. He is the happiest wee man and an absolute delight we are fortunate in so many ways. I am on Facebook too so please feel free to email through your details so I can "meet" up with those of you who have already made contact through it:\).
  • 3boys great to meet you. So sorry that you too are going through vision difficulties but it sounds like Tommy is doing great -- hopefully he will just keep improving! And it's nice that he has brothers to help him out. That's the one thing I wish for Milo -- that he had a brother or sister.

    Lia, you also sound like you are doing really well. My fingers will be crossed that all goes well at the MRI. Milo was sedated (not anaesthetized) and we found it to be a pretty easy experience overall. He was just a little sleepy for the rest of that day. I'm so glad you are moving forward with new info. And one thing to always keep in mind (and our neurologist said it as well) is that babies develop at different rates and when they are this little it is very hard to tell. The fact that Joe is content and keeps making progress is the most important thing.

    Marieke, I just wanted to say that you also sound like you are doing wonderfully. I hope you continue to get more answers. Kamil was born into such a loving, supportive family. He's going to be fine!!

    I hope everyone else is doing well. It has been wonderful to see pics of Joe and Zachariah on facebook (they are both so cute you could drool). I'm also there if you want to e-mail.

    Thinking of all of you...

    jodi
  • Hi all!
    It's been a while since I've been here. Hope everyone is ok, I'm thinking of you all.

    Our son, as you know, was diagnosed with epilepsy in December. We've spent days at the hospital since the seizures are pretty serious and the medicines don't seem to help. Ambulance twice and 6 medicines. But no difference really.

    But what's positive though is that our son's case now seems to be of high priority, and hopefully we will get a diagnosis within a few weeks. They think that our son either has a progressive brain disease (which is not good at all) OR (which would be a miracle) it could be something called "epileptic blindness". In that case surgery could possibly stop the seizures and even make him see. This is probably too good to be true, but I wanted to share the article about epileptic blindness in case any of you in this forum will experience something like it.

    Unfortunately the whole article no longer seems available without subscription, but here is the abstract:

    Prolonged epileptic blindness in an infant associated with cortical dysplasia
    http://journals.cambridge.org/action/displayAbstract?aid=65709

    Take care!
  • Hello All,
    Some of you I have spoken to in my previous post on here and on my post in 'baby' forum but I'll do a brief history here to introduce myself! And my lovely little lady! image

    I am Lydia, mother of 3... my eldest 2 are 11 (girl) and 9 (boy) and now after a big gap I am proud mummy to Baby Lillith Rose. She is 15weeks old and has just changed my life completly.

    Having had my older 2 very early in life when I met my hubby nearly 5 years ago I knew at some point we'd have a family.. though after a long time trying I wasn't so sure!! :roll: Anyway October 6th 2008 at 11.03pm Lillith made her enterance to the world.

    She is such a wonderful little lady, amuses me so much as she spends her days with her lips pursed into a perfect 'pout'!! and she seemed to be developing fine. She smiled at 5 weeks and giggled about 10, turning to look at me and her dad when we spoke to her.

    Around christmas we had a few people mention how much her eyes moved around. So on the 5th Jan I went to my gp and just asked him to take a look, about an hour later we were up in casualty waiting to see a pediatrician. He referred us to an Ophthalmologist and we were seen on the 7th Jan-here they diagnosed Lillith with Albinism, Nystagmus and Delayed Vision Development. Since then life has been a bit of a blur. Sensory support has been twice and we have a development journal for her but what comes next I just don't know. At the moment I am just trying to figure out if I can afford to return to work with less hours than planned as I just want to be the one to be with her.

    Sorry it hasn't been all that short!! :lol: Lovely to meet you all....

    Lydia xx (and Lillith)

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