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  #1  
December 27th, 2007, 05:10 PM
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Hi, I am new at this but here goes,

I have a 9month old girl named Aimee that has been diagnosed with Delayed Visual Maturation. We are from Tasmania, Australia and we also have a 3yr old Emily with perfect eye sight.

Aimee has had an MRI and other tests which were all normal.
.
The ophtharmologist first saw Aimee at about 5 months. I first noticed that something was wrong with her eyes when she was not looking at me when I was feeding her( about 4 weeks). Aimee was an unsettled baby and I just thought it was her just being unsettled. We saw the Paed at about 4 and Half months.

She now is getting better at tracking and following things, she is now grabbing things that is presented to her. She is alot better at watching faces when she is in her cot, or on the changed table or floor. Her motor skills are behind, she is sitting but she has to prop herself up with her hands.

Is there anyone out there with similar experiences with DVM and where can I get more info?

Thanks
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  #2  
December 28th, 2007, 02:25 PM
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Quote:
Hi, I am new at this but here goes,

I have a 9month old girl named Aimee that has been diagnosed with Delayed Visual Maturation. We are from Tasmania, Australia and we also have a 3yr old Emily with perfect eye sight.

Aimee has had an MRI and other tests which were all normal.
.
The ophtharmologist first saw Aimee at about 5 months. I first noticed that something was wrong with her eyes when she was not looking at me when I was feeding her( about 4 weeks). Aimee was an unsettled baby and I just thought it was her just being unsettled. We saw the Paed at about 4 and Half months.

She now is getting better at tracking and following things, she is now grabbing things that is presented to her. She is alot better at watching faces when she is in her cot, or on the changed table or floor. Her motor skills are behind, she is sitting but she has to prop herself up with her hands.

Is there anyone out there with similar experiences with DVM and where can I get more info?

Thanks[/b]
Hello

My little girl, Emily, has also been diagnosed with DVM. She is 9 weeks old and the Health visitors first flagged it up at 5 weeks when she didn't seem to focus too well and because she doesn't really look at me when i feed her.

We saw a specialist and he said everything in her eyes look normal and he was hopeful that she should start to see normally soon. We have a follow up appt on 7th January, to decide if they want to do further tests.

Emily does track things now and seems to see, but then there are times when i am not so sure. She also doesn't seem to like looking at me or daddy in the eyes - but her grandma and grandpa say she looks at them lots. She definitely seems to prefer watching her mobile rather than faces. As far as other development goes she seems fine at the moment, but she is still very young - she does smile and holds her head well and eats well etc.

I am not sure this is much help to you as i don't have any real info and have not found much on the web either. This is the only place i have really found that some other people have similar experiences. It is just frustrating/worrying/upsetting not knowing quite what is happening and whether everything will be OK. Don't know about you, but i have times when i feel there is nothing wrong, but in the last few days i feel there is something not quite right but can't put my finger on it.

Did your little girl do any other things that seemed unusual when she was younger? I have trouble getting emily to sleep in the day, but not sure if this is because my 2 year old is always running around and noisy more than anything else (she sleeps fine in the car or pushchair), apart from that she is a pretty normal baby.

Sorry to be no help at all, apart from letting you know there are other people out there with a similar thing!

Anna
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  #3  
January 1st, 2008, 12:31 PM
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Hi, I don't know much about DVM either, the peds were originally wondering if that's what was going on with Honey.
I feel the same abt my 20 wk old. Some days I'm sure she's getting better and some days I dispear at the whole situation. They're going down the SOD track with Honey now which although it breaks my heart to admit it everything seems to fit. I just can't believe all may not be allright.
I hope your dds get better as they grow, I'll be thinking of you both, we're all kinda in the same boat.
Good luck

P.S This site is great isn't it, its the only place I've really found answers too.
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  #4  
January 1st, 2008, 01:49 PM
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Quote:
Quote:
Hi, I am new at this but here goes,

I have a 9month old girl named Aimee that has been diagnosed with Delayed Visual Maturation. We are from Tasmania, Australia and we also have a 3yr old Emily with perfect eye sight.

Aimee has had an MRI and other tests which were all normal.
.
The ophtharmologist first saw Aimee at about 5 months. I first noticed that something was wrong with her eyes when she was not looking at me when I was feeding her( about 4 weeks). Aimee was an unsettled baby and I just thought it was her just being unsettled. We saw the Paed at about 4 and Half months.

She now is getting better at tracking and following things, she is now grabbing things that is presented to her. She is alot better at watching faces when she is in her cot, or on the changed table or floor. Her motor skills are behind, she is sitting but she has to prop herself up with her hands.

Is there anyone out there with similar experiences with DVM and where can I get more info?

Thanks[/b]
Hello

My little girl, Emily, has also been diagnosed with DVM. She is 9 weeks old and the Health visitors first flagged it up at 5 weeks when she didn't seem to focus too well and because she doesn't really look at me when i feed her.

We saw a specialist and he said everything in her eyes look normal and he was hopeful that she should start to see normally soon. We have a follow up appt on 7th January, to decide if they want to do further tests.

Emily does track things now and seems to see, but then there are times when i am not so sure. She also doesn't seem to like looking at me or daddy in the eyes - but her grandma and grandpa say she looks at them lots. She definitely seems to prefer watching her mobile rather than faces. As far as other development goes she seems fine at the moment, but she is still very young - she does smile and holds her head well and eats well etc.

I am not sure this is much help to you as i don't have any real info and have not found much on the web either. This is the only place i have really found that some other people have similar experiences. It is just frustrating/worrying/upsetting not knowing quite what is happening and whether everything will be OK. Don't know about you, but i have times when i feel there is nothing wrong, but in the last few days i feel there is something not quite right but can't put my finger on it.

Did your little girl do any other things that seemed unusual when she was younger? I have trouble getting emily to sleep in the day, but not sure if this is because my 2 year old is always running around and noisy more than anything else (she sleeps fine in the car or pushchair), apart from that she is a pretty normal baby.

Sorry to be no help at all, apart from letting you know there are other people out there with a similar thing!

Anna
[/b]
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  #5  
January 1st, 2008, 02:30 PM
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Hi, Thanks your reply!

I have had trouble finding any information on DVM and why is occurrs and what the outcomes are. My Paed and eye Dr have not given me a final outcome we just have to wait and see what happens. I find this very frustrating, I think it is the not knowing if Aimee is going to be ok or if there is something else wrong with her.

Anna, we have used lots of stimutlation with Aimee since we found out what it was and she has really improved.
We started with lots of Black and white patterns which she was really attracted to. I got some matterial from the fabric shop and we would hold them in front of her and she would follow and track them. I then introduced colour after a while and she now tracks all things presented to her. I also put up black and white photos up of My other daughter Emily, my husband and myself. She also looks at these photos and now i have put up colour photos and she is now looking at these. We do lots of singing and talking so she knows we are there and Emily gets involved. We Also use toys that have texture and sounds. I found these things have really helped her as she looks at us alot more and is doing more.

She improves everyday and does something new that excites us and that is all we can hope for. I still worry that there could be something else wrong with her but all we can do is wait.

Aimee has been a pretty good sleeper and slept through the night at 6 weeks but she was unsettled during the day and would only sleep for about 40mins at a time. She is better sleeping now and sleeps for a few hours at a time during the day. I am not sure if it's because of the DVM or if she was a fussy baby. i found if i kept her room dark during the day and played some soft music she was a bit better. Goodluck with the sleep! it's hard when you have a noisy toddler!

Hanny what is SOD and what are the syptoms of your Honey? Is it similar to SVM?

Thanks
Shelley

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  #6  
January 2nd, 2008, 01:20 AM
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Septo-optic dysplasia

Definition
Septo-optic dysplasia (SOD) is a rare congenital disorder that includes underdevelopment of the nerves at the back of the eye(s), absence of a part of the brain called the septum pellucidum and/or corpus callosum, and dysfunction of the pituitary gland that produces hormones in the body.

Description
SOD is also known as DeMorsier's syndrome and is commonly recognized as the association of three features: underdevelopment of the optic nerves (optic nerve hypoplasia), absence of midline structures of the brain (most often the septum pellucidum), and problems with the functioning of the pituitary gland in the brain that controls hormone production in the body. These three features of SOD most often cause partial or complete blindness and mild to severe visual problems, difficulty with coordination of mental and muscular activities, such as walking, and short stature. Individuals with SOD may have normal intelligence, or learning problems that can range from mild to severe.

taken from www.healthline.com

I thought Honey was going to be diagnosed with DVM but then the opthalmologist noted her optic nerves are pale ("not obv hypoplastic though" he said) so the ped took blood and her thyroid 's not wotking properly, which would link in to SOD. We've been for endocrine testing to see if her pituitary is working, we were supposed to get results on Mon but no-one called, hopefully they'll call today.

I read up on DVM before and it might be worth googling it, a good site came up as delayed visual maturity in infancy, from brain.berkeley.edu. It's a study of 8 babes and has lots of info. Another good one is a discussion from here a couple of years ago which also comes up on googe.

Hope this is helpful.
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  #7  
January 7th, 2008, 01:20 PM
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Hello

Well we had a follow up appointment with Emily's Consultant Ophthalmologist this evening and he was very pleased and doesn't want to see her again or do any other tests on her unless we feel in the future there are still problems. On seeing her today (she is nearly 11 weeks) he felt that if this was the first time he had seen her then he would have found her a completely normal baby, he also feels that it is unlikely that she will have any mental problems as she has no other development delays and holds her head up very well for her age.

We are obviously very pleased with this outcome, although it was what we were expecting to hear really as Emily has been following/tracking/looking at us very well for the last few weeks and we felt there was nothing wrong with her. I think there will always be some worry in my head until she is old enough that we can know more about how she is, but for now i just have to try to forget about it and get on with enjoying her growing up.

i found this board really helpful when Emily first got her diagnosis of DVM - could find nowhere else online that dealt with vision problems in young children and I really hope that other mum's/dad's on here get lots of improvements with their children.

all the best.

Anna
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  #8  
January 7th, 2008, 01:53 PM
fiefer87's Avatar Mega Super Mommy
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Congrats Anna.

I hope things continue to progress nicely and Emily continues to develop with no other problems.
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  #9  
January 9th, 2008, 05:15 PM
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Quote:
Hello

Well we had a follow up appointment with Emily's Consultant Ophthalmologist this evening and he was very pleased and doesn't want to see her again or do any other tests on her unless we feel in the future there are still problems. On seeing her today (she is nearly 11 weeks) he felt that if this was the first time he had seen her then he would have found her a completely normal baby, he also feels that it is unlikely that she will have any mental problems as she has no other development delays and holds her head up very well for her age.

We are obviously very pleased with this outcome, although it was what we were expecting to hear really as Emily has been following/tracking/looking at us very well for the last few weeks and we felt there was nothing wrong with her. I think there will always be some worry in my head until she is old enough that we can know more about how she is, but for now i just have to try to forget about it and get on with enjoying her growing up.

i found this board really helpful when Emily first got her diagnosis of DVM - could find nowhere else online that dealt with vision problems in young children and I really hope that other mum's/dad's on here get lots of improvements with their children.

all the best.

Anna[/b]
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  #10  
January 9th, 2008, 06:06 PM
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Quote:
Congrats Anna.

I hope things continue to progress nicely and Emily continues to develop with no other problems.[/b]

Hi, I am very Happy for you and your family. I 'm sure Emily will be fine. Make sure you enjoy her they grow up to quick! I have read that DVM usually goes before 3months. Is Emily looking at you or other faces. I know that Aimee tracked and followed things from early on but didn't look at us. She now looks at us but only in certain positions. We had another test for genetics and this all came back normal. Which was a great relief. I still worry a bit because her motor skills are still delayed. BUt she is almost crawling and her physio and vision teacher said once she starts to crawl her vision will improve, becasue she will have to use it to get around. i hpe this is the case!




Thanks Hanny for the info on SOD! I was just wondering what is was and If Aimee could have this! I don't think she could have this because all her test have come back ok! I know it must be hard for you and your family. I do worry about the future for Aimee if things don't work out right.

Cheers
just hug those babes tight they are so precious!!

Shelley
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  #11  
January 12th, 2008, 02:04 PM
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[/quote]

Hi, I am very Happy for you and your family. I 'm sure Emily will be fine. Make sure you enjoy her they grow up to quick! I have read that DVM usually goes before 3months. Is Emily looking at you or other faces. I know that Aimee tracked and followed things from early on but didn't look at us. She now looks at us but only in certain positions. We had another test for genetics and this all came back normal. Which was a great relief. I still worry a bit because her motor skills are still delayed. BUt she is almost crawling and her physio and vision teacher said once she starts to crawl her vision will improve, becasue she will have to use it to get around. i hpe this is the case!



Shelley
[/quote]

Hello,

Emily does look at us now very well and really is looking at us and holding our gaze, but she did only start doing that properly (where we definitely knew she was looking right at us, rather than thinking she was but not totally sure) in the last 2/3 weeks. But then since her initial diagnosis we have spent nearly every waking moment looking at her and trying to get her to respond and getting her to track things, so sometimes she would specifically look away from us - I think we probably overdid it sometimes and she couldn't take it anymore and needed a break.

Our consultant also said to us that DVM usually goes by 3 months, and Emily has been given what he called a 'probable DVM' diagnosis. Did your daughter hold her head up well when she was a young baby (2/3 months ish) as our consultant also said that Emily has very good posture and holds herself up well for her age so he feels there should be no longer term problems?

Apart from that he did not really say anything else about the condition that i can pass on that could be of any help to you. I hope that Aimee continues to improve well and that as you say, once she gets moving things will progress even more. Plus all children develop differently, i had a friend who's baby just bum shuffled from around 10 months and never walked until she was almost 18 months!

Anna
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  #12  
February 9th, 2008, 09:56 AM
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Quote:
Hi, I don't know much about DVM either, the peds were originally wondering if that's what was going on with Honey.
I feel the same abt my 20 wk old. Some days I'm sure she's getting better and some days I dispear at the whole situation. They're going down the SOD track with Honey now which although it breaks my heart to admit it everything seems to fit. I just can't believe all may not be allright.
I hope your dds get better as they grow, I'll be thinking of you both, we're all kinda in the same boat.
Good luck :)

P.S This site is great isn't it, its the only place I've really found answers too.[/b]
hi i've just been looking up sites as my 2mthold son is in the process of being diagnosed with dvm, at first i thought he was blind but they think probably not as his pupils dialte etc, however i am waiting for the sepcialist to look at him now to let me know more about what's going on. he doesn't look at any object or face, doeasn't follow, smile or gurgle. he does appear to move his eyes around and squint at bright light though. i was just wondering what made them decide to look at something else other than dvm for your honey. i am constantly watching him trying to 2nd guess his problems it is so worrying and such a waiting game, i don't even understand why some children have it!
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  #13  
February 11th, 2008, 02:04 AM
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Its frustrating isn't it, i just want Honey to snap out of it and look me in the eye, it seems such an easy and natural thing to do for us.

From wat i understand there is no known cause of dvm, although a large percentage seem to be premmies the rest aren't so maybe they're more prone to it. From what I've read it dramatically improves from 6 months onwards.

The peds started on the ONH and SOD route when her thyroid hormone levels were low. In hindsight she displayed other things too, she was readmitted into hosp after birth as she wouldn't feed bcuz she had incredibly low blood sugar as a result pof the hormonal balance being out of sinc and didn't have the energy to feed. She also had nystagmus- shaky jittery eye movement, wouldn't focus, and didn't smile or giggle til at abt 3/4 mos we realised she loves kisses, any contact around her face, funny noises etc.

The opthalmologist who diagnosed her ONH said she will have DVM too as a result of the SOD. Most babies do get better as they learn to use what they've got. Honey's left eye may be unaffected/less affected (we cannot tell yet) so mum of child with SOD told me she may have double vision, which is a good point.

Good Luck and hang in there we're all here to support u, this forum is amazing!
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  #14  
February 11th, 2008, 01:19 PM
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Quote:
Its frustrating isn't it, i just want Honey to snap out of it and look me in the eye, it seems such an easy and natural thing to do for us.

From wat i understand there is no known cause of dvm, although a large percentage seem to be premmies the rest aren't so maybe they're more prone to it. From what I've read it dramatically improves from 6 months onwards.

The peds started on the ONH and SOD route when her thyroid hormone levels were low. In hindsight she displayed other things too, she was readmitted into hosp after birth as she wouldn't feed bcuz she had incredibly low blood sugar as a result pof the hormonal balance being out of sinc and didn't have the energy to feed. She also had nystagmus- shaky jittery eye movement, wouldn't focus, and didn't smile or giggle til at abt 3/4 mos we realised she loves kisses, any contact around her face, funny noises etc.

The opthalmologist who diagnosed her ONH said she will have DVM too as a result of the SOD. Most babies do get better as they learn to use what they've got. Honey's left eye may be unaffected/less affected (we cannot tell yet) so mum of child with SOD told me she may have double vision, which is a good point.

Good Luck and hang in there we're all here to support u, this forum is amazing![/b]
Thanks, the site is great, it's so nice to find somewhere to talk about this as there doesn't really seem to be much information on it. i guess i will have to wait for more clues then as zachariah is not seeing the ophthamologist until monday and so i'm in the early stages of diagnosis, until then i guess i will just have to play with him lots and lots in the hope of getting some sort of hint that he can see. i know what you mean about wanting them to snap out of it, it's so heart breaking hearing the usual mother stories of babies with mirros and smiles etc, but i guess we just have to be determined and positive for our children. I've had a suggestion from someone to make a box and cover each side with different textures and reflective things so i'm setting my mind on that at the moment, am really hoping there'll be some sort of reaction but it's difficult to know what baby is interested in at moment but i know he is like your honey and loves the physical contact he sometimes just cries until we hold his hand, bless him.

Good luck to you and all the other families on this site, keep strong.
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  #15  
February 12th, 2008, 05:50 AM
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Honey does that too, she waves her hand around til she grasps your finger. think it comforts her.

Manhattan Toy Co do lots of amazing toys, Honey got this http://www.kiddicare.com/webapp/wcs/stores...1__13872_10001_
for Christmas, it made the world of difference, she was a little older than your ds tho, she was born in aug. She loves things that make that crinkly noise too but again its only recently she's been interested.

I felt so negative in the beginning but it does sink in. Just try and ride it out til you know whats going on, its easier to get your head round it then.

Good luck with the Opthal
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  #16  
February 13th, 2008, 02:59 PM
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thank you, i like the look of that mobile definitely need to start looking around for things to interest him. have a jingly toy at moment which he loves for the sound, i'm scared to get too much just yet though until i'm told what is wrong as it would be a real waste if it turned out to be blind rather than delayed or something (but i don't think he is).i think partly i'm sort of going with my head in the sand until i see the specialist which is stupid really as i can see somethings not right, i am not in denial but at the same time not quite there yet.................. not sure what to expect on monday really, do they just look at him this time and wait the 6months before doing scans etc do you know or maybe it is different with each child?

Also wondered whether children who can't see fuss more than sighted babies as sometimes he never seems to settle and i worry it's because of his sight and not just a baby thing perhaps one of you mommies can fill me in as i have none to compare to! thanks

Hope all going well with you and honey (and all others on site)
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  #17  
February 14th, 2008, 08:10 AM
fiefer87's Avatar Mega Super Mommy
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When my dd Alexis was a baby, she seemed to settle relatively easily. I am not sure how much sight she had at that point, but we know she did have some sight as she loved toys with flashing lights. She was pretty content to be on her own, but she was definately the best when she was held. It could be related to the vision, but not necessarily. He could just be a baby who prefers to be held. I know, even with some sight, a lot of the VI kids my dd went to preschool with preferred touch as it help ground them. Even with some sight, touch is the way they really explore things.

I would recommend at least buying one toy that lights up and seeing how he responds. If he turns toward it, then you know there is some vision.
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  #18  
February 15th, 2008, 11:49 AM
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[.

I would recommend at least buying one toy that lights up and seeing how he responds. If he turns toward it, then you know there is some vision.
[/quote]

thank you, i have actually got a sleeping winnie the pooh which has a flashing light pillow but he really doesn't seem interested in it at all, just likes the music. i know he can see light though as he sometimes squints if we pass a bright light or the sun shines on his face. it may just be that at the moment the toy lights are too dull. today though i bought him a mirror with flashing stars around it and a mouse that moves in circles over the mirror so that should cover everything (light, reflection and movement) and with any luck some part of it will grab his attention. it does look now like he notices things as he 'glances over' occasionally but still no real connection, we will see, if it really is dvm i know not to expect much for the 6months (and just have to work hard at it) and the specialist appointment is this monday so with any luck i will be given a slightly clearer picture of the whole situation.

hope all are doing well
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