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DVM Delayed visual maturation: any helpful advice?

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  • hi and thank you for your kind words.
    lilleth sounds like she is doing brilliantly. and vizzi babes sounds like a fantastic idea, i wish we had something like thst around here, i will have to do some resesarch. i'm so sorry there is a chance she has epilepsy and i hope that the tests go smoothly and come back with good news.
    zachariahs mri has been delayed until after christmas as his naughty plan of getting a cold and screaming the place down the moment we got there, scared the drs away! he's now booked in after christmas and tbh i'm becoming more and more uncertain as to whether it's really necessary. it would be nice to know if theres a problem but at the same time it's not going to change anything so should i be putting him through it? - opinions welcome image
    leos mummy: any news on leos scan? ive been thinking of you both and youre in my thoughts and prayers for good news x

    hope you are all doing well and look fwd to hearing all the wonderful positive updates soon, take care and have a lovely christmas. (We're including a shaun sheep mp3 speaker in zachariahs gifts as he absolutely loves music and boogying away- what a sight! lol) x
  • Hello all,

    Hope you and your kiddies are all doing well.

    I just popped in to ask a favour. If any of you get the time could you please answer a few questions on my survey. Im doing a research project for college on how a visual impairment affects child development, and would appreciate all the help I can get.

    Thanks very much image

    Hannah
  • hi everyone.....i was searching under the topic of dvm,and i found this chat ,and it was an aamazing one ,waiting4baby....i need u to contact me by any mean,please...i ve a girl 6 years old was diagnosed at 5months with dvm

    leomummy if you want to chat any time give me when u can ,and i ll tell u when i ll be free to answer any questions to help any one

    thank you :roll::roll::roll::roll:
  • Hi suelovesue, I've just found myself on here and you can contact me by logging in and clicking the email tab under my message. You say your daughter is 6, is she still undiagnosed then? Look fwd to speaking soon
    Leos mummy I'll do the survey but I'm going to have to dig out my records first....... How is leo doing? Has he had his scan yet? Hope all goes well and good luck with your research project image
  • Hi everyone, Ive read through this SO much since my daughter was diagnosed DVM 5 months ago. I thought it had been forgotten about so I was pleased to see some new activity! (although I did just realise I was looking at your joining dates) its been really difficult trying to talk to anyone but lots of people on here have been in similar situations to me. Cut a very long story short (as the ups and downs will be so familiar anyway!) Mia is now 9 months ERG, VEP, MRI, EEG, bloods, chromosomes all normal. Her vision has improved a little she recognises some toys and smiles at them not faces but she has followed things. paed still wants to find an underlining cause, eye doc said at last appt that we are still probably looking at a delay, and she has developmental delays too her head isn't perfect although its improving, she doesn't put much weight on her legs she does roll, chat, and smile and chuckle. she also has reflux. she wont hold things for long but we have portage, vision and PT working with her. I fele confident that her vision will improve somewhat although im not sure that it will become normal as we all first hoped. I would LOVE some input from anyone else who could offer some support! I have been envious of the help that you have been able to offer each other! did start a facebook group but so far its just my Mia! Love to your little ones I feel so familier with them after the last 5 months!
  • Hi I've already replied through email but wanted to bump this up in the hope other mums will add their piece. I hope Mia is continuing to progress and bringing you new joy each day x

    zachariah is still undiagnosed!!!!!! He's had the results of his MRI and all was normal, the bloods cane back normal although they said his immunity something seemed to be low so they'll retest that at some point but it's nothing to do with his vision. Unfortunately he's not very cooperative with the scarey drs which does make everything quite hard but they said they want to redo drops and check if he needs glasses now, they also want to redo the EEG once he's slightly older with more tests involved than the baby one. Other than that there's not much they can do. He's doing well and appears to see well although definitely has to adapt his head to tilt in certain ways to see things of interest. He's still not speaking which everyone is really concerned about as apparently even blind children say more than he does at this age!!! He understands loads though and tries sign language where he can. I'm really proud of him and I know we'll get there in the end because he's my little star image

    hope all of you and your Los are doing well, I can't believe how grown up and of course still so beautiful they all are now, it's wonderful to see such smiley gems x
  • Hi I've already replied through email but wanted to bump this up in the hope other mums will add their piece. I hope Mia is continuing to progress and bringing you new joy each day x

    zachariah is still undiagnosed!!!!!! He's had the results of his MRI and all was normal, the bloods cane back normal although they said his immunity something seemed to be low so they'll retest that at some point but it's nothing to do with his vision. Unfortunately he's not very cooperative with the scarey drs which does make everything quite hard but they said they want to redo drops and check if he needs glasses now, they also want to redo the EEG once he's slightly older with more tests involved than the baby one. Other than that there's not much they can do. He's doing well and appears to see well although definitely has to adapt his head to tilt in certain ways to see things of interest. He's still not speaking which everyone is really concerned about as apparently even blind children say more than he does at this age!!! He understands loads though and tries sign language where he can. I'm really proud of him and I know we'll get there in the end because he's my little star image

    hope all of you and your Los are doing well, I can't believe how grown up and of course still so beautiful they all are now, it's wonderful to see such smiley gems x
  • Hello everybody!

    I just got home from work and the rest of the family is sleeping, but while searching for information on DVM I found this forum and I'm thrilled about it! I will sit down soon and read it through from the beginning, but for now all I see is some people that my wife and I can relate to! We have a 5 1/2 month old little boy with numerous challenges, one of which is his unresponsive vision. We have not been diagnosed with DVM, but we have been diagnosed with epilepsy which is being treated with phenobarbital. Little Jack has had 2 EEGs, 1 MRI, a chromosomal micro-array, skeletal survey, many blood tests as well as some kidney/heart examinations. They also tested him for a rare condition called Menkes, but it doesn't look like that is the case. We are hoping that our little boy can get through all of these challenges.

    I keep finding articles that have happy endings i.e. babies develop their vision and get better, but as you all know the worrying can tear a parent apart. I've got to go to bed, because the "Daddy-Day-Care" starts in a few hours, but I am looking forward to reading your stories and sharing the joy that my little man brings me every day with you.

    I also can't wait to show my wife this forum - she's going to love it.
  • Hello jacks dad, this thread has gone a bit quiet now as I think we're all just getting on with whatever diagnosis we have or haven't been given now tbh but I still pop in occasionally for updates etc, I'm glad you found us and am impressed you want to read through the whole thread- it's just so long now I can't imagine it's a quick task lol!
    I'm sorry to hear about the problems you are having with jack and hope you get some answers soon, the worrying never stops but our babies are just amazing and will surprise us everyday. He looks adorable btw image

    Update on us:
    Zachariah went to the opthomologist today and was very brave and good as gold, they were so pleased as it meant for the first time they were really able to see for themselves his issues. He still has a very prominent head tilt and quite obviously can't move his eyes alone or focus head on. One eye drifts in and he's coming up as long sighted so they want to try him with glasses and see if that helps with the drifting eye. I'm really hoping he thinks glasses are as cool as his sunshades but we will see.

    Aside from his vision he's still very delayed in his speech only saying about 5words and that's all relative names or nicknames. He's also got a limp down to one leg being slightly longer than the other and his foot is still inturned so we are waiting on physio, he's also going to be tested for autism as displaying some signs but nothing too concerning.
    All in all though he is doing fantastically and won't let anything stop him, he's still the apple of our eyes and wins everyone over with just being so darn cute.

    Hope all is well with all of you and your Los, I think about you all lots, take care x


    [Modified by: waiting4baby on October 12, 2010 12:42 AM]

  • Hi everyone,

    I see this forum hasn't been active for quite some time, but I am posting to it anyway because it is the only one where I think I can find some confort...

    My daughter, Helen, has been diagnosed with DVM... or almost diagnosed... Let me start from the beginning: when she was 2 1/2 months, I noticed that she was not focusing and not following objects. Apart from that, her eyes were moving all the time, up, left and right. She was reacting to very bright light, by closing her eyes. When she was 3 months old, we visited a children's opthalmologist who said her eyes were fine, pupils, retina, optic nerve etc. and suggested the problem was neurological. You can imagine how we felt at the moment as all sorts of things began crossing our minds - brain tumor, epilepsy, celebral palsy...- no need to expand further.

    Anyway, the next day we visited a child neurologist in the Children's Hospital (by the way, we live in Athens, Greece) who said that she does not see any neurological symptoms, that the only thing she sees is the eyes that make these odd movements and she sent us to see another opth who is specialised in visual evoked potentials. She also asked that we do a brain ultrasound, that would show any large damage to the brain and it less stresfull than an MRI. The ultrasound came back clean.

    The second opth said everything was fine with Helen's eyes and she talked of an "immaturity" - that's why I said that the diagnosis was not exactly DVM - not in these words anyway. She said that it is something she has seen many many times and that it will correct itself eventually, she said there was no need to have the VEP as everything was looking OK and that she wants to see her again in September.

    Helen is now 4 1/2 months old. She can hold her head (I have a paeditrician app tomorrow, I want her to see how well). At 90% of the time she has her head leaning left, I don't know if this means something or if she just has a preference to the left side. Her eyes have more normal movement, but it is clear that she doesn't see a thing. She doesn't follow light, or anything else. She is playing at times with a toy duck, but I think it is because she is touching it, rather than seeing it.

    The reason why I am writing to you is that I am going crazy with this waiting game... I am waiting for this day I have read so much about, when the child sees, almost by magic. How are your babies doing now? Can I still hope?
  • I forgot to mention that Helen is a full term baby, with excellent labor (1/2 hour), good weight. Now she is rather large, weighting 9 1/2 kilos (25 pounds) and otherwise healthy.

    She eats well (obviously image ) and sleeps well.
  • Are there any parents out there who are currently struggling with delayed vision or other problems with vision? This is an old conversation, but maybe someone is still reading this. I would really love to share thoughts with someone in similar situation.
  • Hi my LG is nearly 9months old with dvm. She isn't rolling over or sitting up. Her head control is a little wobbly and she still isn't reaching out or grabbing her toys. Her consultant still puts this down to dvm. I know this is an old post but if anyone is still going through the same situation, I'd love to hear from you. This is my first baby and feel so confused and alone. Xxx to the parents on here how are your little ones now. 

  • Hi Mia,

    I've just read the whole thread and was grateful to see your post from this year. 

    My LO is 9 weeks tomorrow and this week had an appointment with a paediatric  ophalmologist. Her eyes were continuously moving and she isn't fixing and tracking so we thought she had Nystagmus. But the Consultant thinks it might be DVM. 

    I'm very anxious and quite devastated as my first daughter speby time in neonatal ward due to meconium during birth and we were worried that would negatively affect her but luckily she is fine. Whereas we had a straightforward labour this time and there is no family history of eye problems and baby's eyes seem to be physically fine but she cannot see.

  • Hello, just to let you know (I don't know if you will find it helpful) that Helen has been diagnosed at 16m with Pontine Hypoplasia, which is causing the nystagmus and the lack of coordination. She is know 4,5y, sits, crawls, doesn't walk or stand on her own but walks with a walker, started to speak (words mostly and some phrases). She is having OT, PT and language therapy twice a week for the last 3 years. Her vision has improved greatly thanks to an intervention program- she can now look at pictures in a book and actually see them. My advise: don't listen to doctors who tell you to wait and see. Even if you can't get them diagnosed, start the interventions (PT, OT) on your own. I know I would have if I could turn back time...

  • Thanks Helens_Mum. we have a follow up appt in 3 weeks and I hope there will be an improvement. But I do worry that despite DD appearing 'normal' just now there will be a hidden neurological problem. 

    I will be asking about PT etc at next appointment.

  • Hi all

    I know this is a really old post but when I realised my little girl couldn't see around 6 weeks old and I was researching,  there was not much info out there esp on dvm.  I often read posts on websites but rarely the poster came back and added how it turned out.  I wanted to know more and never could so I have returned here as I hope my post may give others hope and encouragement. I was terrified when hv agreed my girl couldn't see.  It all moved quick and at 8 weeks we saw an eye specialist who confirmed she could only see light.  He dilated hwr eyes and said nothing physically wrong they look perfect it's just dvm don't worry.  Easy for him to say.  She wasn't smiling and just looked thru everything.  Awful time.  At 9 weeks I noticed she could see my black a d white polka dot changing bag.  I moved it,  she tacked it.  It moved  fast from there,  black and white patterns to pictures to colourful objects to faces to... Everything!!!  We couldn't believe it!  At 12 weeks we were pretty sure she saw everything.  She smiles away as we stick our tongue out,  chats and laughs with toys and just interacts.  She is a different baby.  Yesterday at 16 weeks the eye specialist signed her off with having perfect vision.  My girl always was perfect to me but now she even is to the docs too.

    Dvm is terrifying but it can be ok.  Love to all,  I hope I have helped,  I so wanted to find more posts like this when we were diagnosed xxx

  • Thank you for that post. Often posters don't come back so uou don't know what happened.

    My DD is 13 weeks now and seems to be able to see black and white pictures and toys. Tracking and following is improving. However her eyes still move side to side frequently so I'm back thinking she has Nystagmus. She hasn't discovered her hands yet. 

    2 more weeks till her appointment so we'll see what they say. 

  • Hi, what is your appt for? I hope it is useful. we found that we were just told that until she is 6 months they don't want to check the baby further as in most cases the vision does come by then. they did dilate out los eyes to check structure and optic nerve in particular.

    Great you lo sees black and white. ours moved quickly from there.

    if anyone would like to chat get ideas or advice please chat to me. I'd like to be of help! x

  • It was a follow up Ophthalmology appt. Since then we' had an MRI and a VEP test. We'll get the results in 2 weeks at our next Ophthalmology appt. 

    She is now 22 weeks and her eyes since move side to side. But she can see to play with toys and follow things. However she can't see very far.

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