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  #1  
April 20th, 2006, 02:19 PM
Member
Join Date: Mar 2006
Posts: 39
Hi,
my name is sam and i have a 5mnth old baby girl called milly im from th UK.
I first noticed a problem with her eyes when she was 7 weeks. I know this as im an orthoptist and see patients with squints, lazy eyes, eye muscle problems etc.
Her eyes were all over the place and would not fix and follow. i was really worried.
I got seen by my collegues at work. Her eyes were healthy and fine so that was ok. Shes had the following tests done:
MRI - Normal
Chromosomes - Normal
Blood - Normal
EEg - Normal
So what could be wrong with her delay?? Its soooo fustrating not knowing wats wrong
Shes such a happy baby, smiling and content.
She has poor head control yet but moch better and getting better- I think its because she cant see well and has no incentive to hold her head and look around.
Has any1 had similar expereiences and if they have when did they start looking? is it gradual or all of a sudden??. Milly is slowly getting there, but not quite there yet.
Please help!
Ps any1 with any questions on patching, eye muscles, glasses etc please feel free to ask!
By the way this forum is kool. Sorry for this long 'essay'!
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  #2  
April 20th, 2006, 02:27 PM
pattyandthemoos's Avatar Administrator
Join Date: Feb 2004
Location: Michigan
Posts: 61,857
Welcome to the board! My son Brandon was diagnosed with Optic Nerve Hypoplasia by one opthalmologist but a different one said he had delayed visual maturity. I don't know a whole lot about it but I think that may be what was going on with Brandon. I think it is just where your vision doesn't develop normally and there is a delay. Brandon was not tracking until about eight months and then it was not very good. He also had problems with nystagmus (jerky eye movements). I have not been able to find a lot of information on delayed visual maturity but I think that is more or less what happens.

Please stick around. We have a small group here but everyone is really supportive.
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  #3  
April 20th, 2006, 02:42 PM
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Join Date: Mar 2006
Posts: 39
How is brandon now? Dont worry i intend to stick around!! Im glad i found you guys. Optic nerve hypoplasia is when the optic nerve is not developed properly or not there. Delayed visual maturation is when everything is there but the brain is not sending signals to the eyes to work.
In millys case she has everything there but not using it!
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  #4  
May 18th, 2006, 10:03 PM
Regular
Join Date: May 2006
Posts: 2
Hi,

I'm Katie, have a 3 month old baby girl Sophie (born 2 months preemie) and live in Australia. This is my first attempt at posting.

Sophie, seems like Milly in that her eyes wander all over the place and she can't seem to fix on, or track anything. I noticed early on that she wouldn't give eye contact or fix on anything, whereas she clearly responds, smiling, or jerking to noises and voices.

I'm really worried because even the youngest newborn at the baby group I attend gives eye contact and fixes on faces.

The eye specialist I have been to has ruled out ROP, says her eyes are healthy and suggested visual maturation delay - to be followed up at 6 months if the situation hasn't improved.

I would love to hear from anyone experiencing something like this.
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  #5  
May 19th, 2006, 02:57 AM
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Join Date: Mar 2006
Posts: 39
Hi katieK

I think you should wait for your little one. I think shes a premie and is 2 months behind so you have to account for that. Usually a child at the 'normal' age of 3 months should be able to fix and track things. I suggest to hang in there and hopefully shell be fine. You can always email me or PM me if you have any worries!
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  #6  
May 19th, 2006, 05:48 AM
pattyandthemoos's Avatar Administrator
Join Date: Feb 2004
Location: Michigan
Posts: 61,857
Quote:
How is brandon now? Dont worry i intend to stick around!! Im glad i found you guys. Optic nerve hypoplasia is when the optic nerve is not developed properly or not there. Delayed visual maturation is when everything is there but the brain is not sending signals to the eyes to work.
In millys case she has everything there but not using it![/b]
See this is what I am not sure of. The first doctor was quick to diagnose him with Optic Nerve Hypoplasia. She now says its mild. Well the other doctor said he could see why she might think it was ONH but that he doesn't think that is the case. Brandon was a preemie and he is globally developmentally delayed so I am wondering if he was just delayed in his vision too. I am just not sure if she was right to diagnose him with ONH at such an early age.
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  #7  
May 19th, 2006, 06:09 AM
pattyandthemoos's Avatar Administrator
Join Date: Feb 2004
Location: Michigan
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Quote:
Hi,

I'm Katie, have a 3 month old baby girl Sophie (born 2 months preemie) and live in Australia. This is my first attempt at posting.

Sophie, seems like Milly in that her eyes wander all over the place and she can't seem to fix on, or track anything. I noticed early on that she wouldn't give eye contact or fix on anything, whereas she clearly responds, smiling, or jerking to noises and voices.

I'm really worried because even the youngest newborn at the baby group I attend gives eye contact and fixes on faces.

The eye specialist I have been to has ruled out ROP, says her eyes are healthy and suggested visual maturation delay - to be followed up at 6 months if the situation hasn't improved.

I would love to hear from anyone experiencing something like this.
[/b]
My son was a preemie as well but he had some other issues with his vision. He didn't track till he was eight months. He also used to have nystagmus (jerky eye movements) but I haven't noticed that lately. I think prematurity has a lot to do with vision development. Are you doing any sort of vision therapy? You might want to try that. If you can't get a vision therapist you can work on getting her to track by using black and white board books and bright colored beads. That is what I would start with.
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  #8  
May 22nd, 2006, 12:54 PM
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Location: Coushatta, La
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Hello and welcome!!

My son has a brain disorder called Joubert Syndrome. He is behind as well and does not hold his head up yet. As far as his eyes stuff he has coloboma in his right eye and is farsided in both eyes. He wasnt able to open his eyes much either but we had surgery to fix that.

I know what its like to have a child that is slow to develop. Sorry that they haven't given you a dx yet.

We are all here for you!
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  #9  
May 25th, 2006, 07:55 PM
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Posts: 2
Hi everyone.

Thankyou Sam and PattyandtheMoos. I was feeling so alone with this, its great to hear from you guys.

Sophie is now tracking things (especially Mum and Dad) although her eye movements are a bit jerky. Its a big improvement on a couple of weeks ago. She even tries to turn her head to follow us, but her head control is still not very good. She still seems to have trouble focusing on things, but I am hopeful that this too will improve.

Please keep posting and let me know how Brandon and Milly are getting along.

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  #10  
June 28th, 2006, 09:08 PM
Regular
Join Date: Jun 2006
Posts: 93
Hello, My name is Kalynn
I have a 7 month old who is very similar to Milly. Was Milly premature? My daughter Sonora was not. Everything has also came back normal, she has done the MRI, Organic testing, EEG was today I will get the results on Friday. I know that she can see, I just do not know how well. How is Milly doing? The doctors are talking about cortical vision impairment or delayed visual maturation. Any information from anyone would be helpful. As everyone of us knows how frusterating it can be not knowing!

Also, my daughter was first diagnosed with ONH, we had an MRI and a second opinion and found out she did not have that. I am so confused.
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  #11  
July 2nd, 2006, 01:19 AM
pattyandthemoos's Avatar Administrator
Join Date: Feb 2004
Location: Michigan
Posts: 61,857
Quote:
Hello, My name is Kalynn
I have a 7 month old who is very similar to Milly. Was Milly premature? My daughter Sonora was not. Everything has also came back normal, she has done the MRI, Organic testing, EEG was today I will get the results on Friday. I know that she can see, I just do not know how well. How is Milly doing? The doctors are talking about cortical vision impairment or delayed visual maturation. Any information from anyone would be helpful. As everyone of us knows how frusterating it can be not knowing!

Also, my daughter was first diagnosed with ONH, we had an MRI and a second opinion and found out she did not have that. I am so confused.[/b]
I totally know how you feel. Brandon was diagnosed with ONH. His MRI came back normal as well. Another opthalmologist said it wasn't ONH but delayed visual maturation. But the first one, the one we are still seeing, thinks he has mild optic nerve hypoplasia. I kind of think its a subjective diagnosis. Maybe she does have ONH. I have kept his original diagnosis because his opthalmologist still thinks that is what he has. He doesn't appear to have major vision problems now but I am just not sure.



Welcome to the board and sorry for the late response.
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  #12  
July 5th, 2006, 11:01 AM
Regular
Join Date: Jun 2006
Posts: 93
Quote:
Quote:
Hello, My name is Kalynn
I have a 7 month old who is very similar to Milly. Was Milly premature? My daughter Sonora was not. Everything has also came back normal, she has done the MRI, Organic testing, EEG was today I will get the results on Friday. I know that she can see, I just do not know how well. How is Milly doing? The doctors are talking about cortical vision impairment or delayed visual maturation. Any information from anyone would be helpful. As everyone of us knows how frusterating it can be not knowing!

Also, my daughter was first diagnosed with ONH, we had an MRI and a second opinion and found out she did not have that. I am so confused.[/b]
I totally know how you feel. Brandon was diagnosed with ONH. His MRI came back normal as well. Another opthalmologist said it wasn't ONH but delayed visual maturation. But the first one, the one we are still seeing, thinks he has mild optic nerve hypoplasia. I kind of think its a subjective diagnosis. Maybe she does have ONH. I have kept his original diagnosis because his opthalmologist still thinks that is what he has. He doesn't appear to have major vision problems now but I am just not sure.



Welcome to the board and sorry for the late response.
[/b]

Quote:
Quote:
Quote:
Hello, My name is Kalynn
I have a 7 month old who is very similar to Milly. Was Milly premature? My daughter Sonora was not. Everything has also came back normal, she has done the MRI, Organic testing, EEG was today I will get the results on Friday. I know that she can see, I just do not know how well. How is Milly doing? The doctors are talking about cortical vision impairment or delayed visual maturation. Any information from anyone would be helpful. As everyone of us knows how frusterating it can be not knowing!

Also, my daughter was first diagnosed with ONH, we had an MRI and a second opinion and found out she did not have that. I am so confused.[/b]
I totally know how you feel. Brandon was diagnosed with ONH. His MRI came back normal as well. Another opthalmologist said it wasn't ONH but delayed visual maturation. But the first one, the one we are still seeing, thinks he has mild optic nerve hypoplasia. I kind of think its a subjective diagnosis. Maybe she does have ONH. I have kept his original diagnosis because his opthalmologist still thinks that is what he has. He doesn't appear to have major vision problems now but I am just not sure.



Welcome to the board and sorry for the late response.
[/b]
[/b]
With Sonora everyone is telling me now that she does not and it is somthing with her brain. Cortical Visual Impairment or Delayed Visual Maturation. How is Brandon's vision? Did he appear blind and then his vision caught up? Sonora was not a premiee so we are confused as to why she is in the position she is in. Her nystagmus is almost gone now.
Over the last few days she starting trying to grab my hair, hit me in the face and swing at her toys with her hands. She is laughing all the time now. It was like a light switch went on in her head.

You were saying he does not appear to have vision problems now, that has changed recently? They are so confusing but I love her more than anything!

Also, do you know how I post a photo of her?
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  #13  
April 25th, 2007, 11:26 AM
Regular
Join Date: Apr 2007
Posts: 1
Quote:
Hi,
my name is sam and i have a 5mnth old baby girl called milly im from th UK.
I first noticed a problem with her eyes when she was 7 weeks. I know this as im an orthoptist and see patients with squints, lazy eyes, eye muscle problems etc.
Her eyes were all over the place and would not fix and follow. i was really worried.
I got seen by my collegues at work. Her eyes were healthy and fine so that was ok. Shes had the following tests done:
MRI - Normal
Chromosomes - Normal
Blood - Normal
EEg - Normal
So what could be wrong with her delay?? Its soooo fustrating not knowing wats wrong
Shes such a happy baby, smiling and content.
She has poor head control yet but moch better and getting better- I think its because she cant see well and has no incentive to hold her head and look around.
Has any1 had similar expereiences and if they have when did they start looking? is it gradual or all of a sudden??. Milly is slowly getting there, but not quite there yet.
Please help!
Ps any1 with any questions on patching, eye muscles, glasses etc please feel free to ask!
By the way this forum is kool. Sorry for this long 'essay'![/b]
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  #14  
May 16th, 2007, 03:53 AM
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Join Date: May 2007
Location: Singapore
Posts: 29
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Hi Saim,

I have a 4 1/2 month old boy who has exactly the same condition as your daughter. I have had a few tests done like MRI and some blood work...everything seems to be normal. Your child is almost a year older than mine. Can you please tell me what is her condition now. No doctor seems to think it is delayed visual maturation. They just do not say anything about my Son Rishi. He has been suggested therapy as he is delayed in his motor skills too. I live in Singapore. Please write to me as soon as possible.... my e-mail is [email protected].

Hope milly is doing fine now.

Yama




Quote:
Hi,
my name is sam and i have a 5mnth old baby girl called milly im from th UK.
I first noticed a problem with her eyes when she was 7 weeks. I know this as im an orthoptist and see patients with squints, lazy eyes, eye muscle problems etc.
Her eyes were all over the place and would not fix and follow. i was really worried.
I got seen by my collegues at work. Her eyes were healthy and fine so that was ok. Shes had the following tests done:
MRI - Normal
Chromosomes - Normal
Blood - Normal
EEg - Normal
So what could be wrong with her delay?? Its soooo fustrating not knowing wats wrong
Shes such a happy baby, smiling and content.
She has poor head control yet but moch better and getting better- I think its because she cant see well and has no incentive to hold her head and look around.
Has any1 had similar expereiences and if they have when did they start looking? is it gradual or all of a sudden??. Milly is slowly getting there, but not quite there yet.
Please help!
Ps any1 with any questions on patching, eye muscles, glasses etc please feel free to ask!
By the way this forum is kool. Sorry for this long 'essay'![/b]
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  #15  
May 17th, 2007, 12:39 PM
Regular
Join Date: Jun 2006
Posts: 93
Hello,
My name is Kalynn, I live in Minneapolis Minnesota, I have a daughter named Sonora she is also undiagnosed. Milly and her were very similar when they were younger, Milly is doing better with gross motor skills than Sonora now, if I remember correctly Milly still has nystagmus. Sonora is now 18 months, she had nystagmus from age 5 months to 7 months. Nystagmus is somthing that does not usually go away so the doctors do not know what to tell me. I have done every test that there is, I flew her to Atlanta to see a specialist Dr. Shoffner, he is a metabolic specialist. They did a muscle, skin biopsy, spinal tap, blood and urine. She had a lot of these tests already done, but he is the best, people from all over the world fly to him. We are still waiting on results which could be here in the next few weeks. You can e-mail me or ask me any questions.

Sonora is doing better, she is trying to coordinate her body with her vision which is really hard for her. She has vision she just has a hard time with coordination. I would definatly suggest taking advantage of Early Childhood development programs.

Kalynn
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  #16  
May 17th, 2007, 11:09 PM
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Location: Singapore
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Hi Kalynn,

Thankyou for replying to me. I am so glad that now I have someone to guide me. I live in Singapore. Here, I am sent only to a paediatric neurologist for Rishi's problem. They have done blood test for amino acid and chromosomes and urine culture. All that is normal. The eye exam also showed everything normal. Let me know why you went to a metabolic specialist. Please also let me know the outcome of other tests. Rishi does not have nystagmus. He looks completely normal when you see him. He tracks gratings and a bit of light. Since we started his OT 2 weeks ago his head is a lot steadier but not really steady.

I was planning to bring him to the US for some treatment but I am still researching where to take him. CHOP in Philadelphia has given me appointment for Dec-Jan. I do not think I will sit till then. What kind of therapy did Sonora undergo? Right now Rishi is only getting therapy for motor skills. Specifically exercises to have his head steady. Tummy time kind of stuff. What else do you suggest for Rishi...

Rishi is a full term baby and is quite a big baby. He wasn't born that big but by the time he got into his second month he suddenly reached 95 percentile in his height weight and head circumference. Since then he has maintained that. Although 5 months old he wears 12 month size clothes. I conceived him through artificial insemnation. I wonder if any of these things mean something. Again I also have a lot of health problems...eye specifically for which I have been on long term steroids. Do you have any of these things in common? I do not know how to reach you by e-mail. You can write to me at [email protected].

looking forward to your help and guidance

Thanks
Yama



Quote:
Hello,
My name is Kalynn, I live in Minneapolis Minnesota, I have a daughter named Sonora she is also undiagnosed. Milly and her were very similar when they were younger, Milly is doing better with gross motor skills than Sonora now, if I remember correctly Milly still has nystagmus. Sonora is now 18 months, she had nystagmus from age 5 months to 7 months. Nystagmus is somthing that does not usually go away so the doctors do not know what to tell me. I have done every test that there is, I flew her to Atlanta to see a specialist Dr. Shoffner, he is a metabolic specialist. They did a muscle, skin biopsy, spinal tap, blood and urine. She had a lot of these tests already done, but he is the best, people from all over the world fly to him. We are still waiting on results which could be here in the next few weeks. You can e-mail me or ask me any questions.

Sonora is doing better, she is trying to coordinate her body with her vision which is really hard for her. She has vision she just has a hard time with coordination. I would definatly suggest taking advantage of Early Childhood development programs.

Kalynn[/b]
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  #17  
May 18th, 2007, 03:07 AM
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Join Date: Mar 2006
Posts: 39
Hi yama

Milly is doing well (touch wood).
At the moment she has really amazed me with what she can do! She still has nystagmus like eye movements however she can see well.
Her motor development has just started to come along now.
She is 18 months now. She sits unaided very well, lifts her self from the floor into crawling and sitting position, pulls to stand and does a few side steps.
she has had help from physiotherapy (PT) and she is doing things by her own way. when i teach her things she doesnt like it, she'd rather do things her own way.
She says mama papa. Eats well, sleeps well.
I was worried initially but god has blessed me with a beautiful little girl who is sooo happy and content that im just glad i have her. So what if shes delayed as long as she is healthy i dont mind anymore.
Currently we are waiting for a skin biopsy result which was done to see if she had a metabolic disorder.
I know its difficult when your child is so small, you worry what their outcome is, hopefully things will get better!
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  #18  
May 18th, 2007, 10:51 PM
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Hi,

Thankyou so much for your reply.
I am glad to see things changing with Milly. I am hoping and praying for the same with Rishi. He is also a very happy and sweet child. He never troubles me for anything. We just had results for blood and urine and everything is normal. What kind of physiotherapy did you give Milly. Does the PT have a web site? In Singapore there is only 1 such type of therapist. There is nothing to compare with. Can you give me some details on what you do with Milly on a day to day basis ( when she was not so active).
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  #19  
June 21st, 2007, 08:57 AM
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Join Date: Jun 2007
Posts: 1
Hi, I am new to this site, but was led to it by a Google search for delayed visual maturation. Just wanted to say my son Joe, now almost 4years, was diagnosed as showing this - which is a catch-all for 'not visually responsive, don't know why' - and had optic nerve hypoplasia discovered in his left eye (totally blind in this eye). Still not clear why he didn't look at faces, follow objects with his eyes, or smile etc until he was 6 months old..his right eye is fine. Anyway, after many anxious months and further investigations, i want to tell you he DID start looking at around 6 months, and is doing beautifully now (of course still blind in left eye, but this seems a small thing given all our fears!)... I believe most cases of delayed visual maturation without clear physical causes do resolve around 6 months...I can direct anyone interested to some articles, but I notice there's also an eye expert mum on this strand...I'm just an interested amateur who works in autism research!
Best wishes to any mum's out their dealing with visually unresponsive kids - I know it was a dark time for us, but I hope things will resolve well for you too. To any new mums worried about their 2month-old not looking to tehir face and smiling - don't be put off by dismissive GPs - ask for a referral to a specialist centre (Great Ormond Street Hospital was our rescuer!)...
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  #20  
July 19th, 2007, 09:01 AM
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Hi Joe's mummy,

My son Rishi also seems to have delayed visual maturation. Atleast that's all that we can attribute the low vision to now. He is 6 1/2 months and tracks objects (not very small ones) but he focusses on objects quite sparingly. He will reach out for objects if they are held at arms length. Do you think if it is DVM, his vision will get better or whatever stage they reach by 6 month is what they will remain at? At 4 months he was not able to track anything at all. Not even black and white gratings. He has started to track since the last one month. Do you think the Ormond Street Hospital would be helpful for Rishi? What do they actually do there? Please let me know your experience there.

Thanks

Yama
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