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  #1  
May 5th, 2008, 09:25 PM
Regular
Join Date: May 2008
Posts: 2
Hi my son Jase is 10 weeks old. We have been to 2 different Opthamologists and they both have said that Jase could be blind. He wont respond to the flashlight test or any moving objects. He acts like he just is looking at the light all the time. We wont go back to the Doc for another 3 and a half weeks and this is going to stress me to the max. does anyone know what this might sound like or have any children with these same types of symtoms? Please let me know what you think thanks
Jase's mom
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  #2  
May 6th, 2008, 04:01 AM
Regular
Join Date: Feb 2008
Posts: 55

hello, i have a son zachariah who is now 5 months and since about 5/6 weeks we had a problem with him too. in fact it sounds very similar although we weren't told he could be blind (yet!) he doesn't copy faces, didn't smile and never appeared to look at anything, faces - toys - nothing.By 8 weeks we saw a dr who gave the diagnosis DVM - delayed visual maturation- this basically means it looks like his eyes should work , no wobbling, lazy eye, cateracts, etc but his brain and eyes haven't made the connection so it should slowly begin to sort itself out at around the 6month mark. Apparently really common in premature babies, and occassionally difficult births.
Anyway by 3 months we saw an opthamologist and had no response to anything either although when they turned all the lights off and then on he appeared to widen his eyes. (he also squints in very bright sunlight) Have they given him drops to see the back of his eyes? if so do they say everything should be working? had he got his optic nerves attatched? Anyway i can't really give you any suggestions other than the dvm as i'm sorry to say it does appear to be a waiting game, because they can't ask the children outright what they can see they can only go on what they can pick up on themselves. As i said we are at the 5 month mark now and he still doesn't appear to see anything (maybe a better word is fix on anything) although we still get the odd reaction to very shiny objects or the sun, (not always mind) and we are now waiting for more tests to be done mri scans, neurological etc .
you said jase appears to just stare at the light, is that all the time or does he look as though he is looking around the room? i am pretty sure with my son i used to think he was fixated on the ceiling but his eyes do move around the room he just doesn't take any interest in anything (although my mother swore he was fixated on a metallic ball which had light reflecting off it, thing is, it's very difficult as a lot of it may just be wishful thinking! )
i'm so sorry you're having to deal with it, it is so frustrating knowing something is wrong and having to wait for the answers, but if you do want to chat, i'm here, and i'm sure all the other mums here can help you along the way too. Good luck and try not to worry just enjoy everything else your little boy is doing, if he's anything like mine he'll be a right little monster . but a lovely one lol!
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  #3  
May 6th, 2008, 07:43 AM
fiefer87's Avatar Mega Super Mommy
Join Date: Aug 2007
Location: Near Buffalo, NY
Posts: 4,336
Welcome, I am Jennifer, mommy to Alexis who was born with septo-optic dysplasia. her nerves never fully developed in utero and she is visually impaired, though not totally blind.

I am very sorry you are going through this. It is rough, stressful, sscary, and very confusing. Believe me, I understand. Just a couple of questions first, was your son born premature? Did he require oxygen at birth? I ask since it is not common for kids to see an optho at 10 weeks unless there is some indication that their may be blindness or retinal detachment or what not.

Also, as katkoota asked, did they dilate his eyes to check the structure of the eye? Are the retinas attached? Are the optic nerves properly formed?

I don't know what other types of info to give you other than when Alexis was little and first seeing the optho, she had trouble tracking the lights, had a slow pupil response (pupils dilating) to light, and what not. We were also told that the best we could hope for would be light perception and seeing shadows. Not very encouraging, but I think in the long run, that worked very well for us. Anything more than that has been a huge blessing. I would have rather been prepared for the worst and gotten so much more than heard well a lot of kids get X amount of vision, and then if she never got that, be devestated. I think they just need to prepare you. The eye is a funny thing and they can never tell you for sure at this stage how much vision a child with any sort of visual impairment will have since vision will develop until they are at least 2.

But for now, as crappy as it is, it is a waiting game. And without more specifics, I can't give you any more info. But we are here for you, to cry and commiserate, to listen when you vent, and to try and answer any questions you have. We have all been through the waiting stages, and the grief and loss a VI or blindness diagnosis brings.
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<div align="center">Thanks Alison's Mommy, SillyMama, Katarina and samylaine for my blinkies.</div>
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  #4  
May 8th, 2008, 06:56 PM
Regular
Join Date: May 2008
Posts: 2
Hi thanks so much for your response. It is always nice to hear other mom's stories and their support. Jase seems to be looking around at the lights i believe. he likes to play under a little moblile toy that i recently bought for him, it has lights on it. I would really like to belive that he is looking at them... He is a very happy little boy and alert. I pray to god every day for him, I know that whatever happens we will make it through... Thanks again for the support.
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  #5  
May 9th, 2008, 07:21 AM
fiefer87's Avatar Mega Super Mommy
Join Date: Aug 2007
Location: Near Buffalo, NY
Posts: 4,336
Well, it definately sounds like there is some sight, especially if he is staring at the lights on the mobil, if he couldn't see it, it would not hold his attention long. How much is almost impossible to say at this stage. My daughter is 6 and we are just starting to get a handle on what her sight is. Then again, she has some sever speech delays, so she really can't tell us what she sees, lol.

But hang in there, and please keep us posted.

Also, I would focus on toys that light up and make a lot of noise. With limited sight, regular toys are not going to be very interesting to him, and I am very confident that he is seeing lights. You are going to want to encourage that and help get him interacting with light up and musical toys. This will motivate him to explore things. Also, you do NOT want anything that is very busy, especially for books, a little ways off, but good to start thinking about now. You want simple illustrations, and high contrast pictures, Eric Carlse (i think that's how you spell the lst name) was recommended by my daughter's vision teacher. Also, you want things with high textures and touch and feel books and start introducing them early. The different textures will also help motivate him to explore, and by starting early, you may elimation some of the tactile defensiveness VI kids can get. Because they have trouble seeing what they are looking at, they get very defensive with touching new and different textures, so the earlier you start introducing new textures, the less likely for extensive tactile defensiveness.

Also, if the opthalmologist hasn't discussed it yet, I would look into vision services. There are special teachers that work with visually impaired to improve vision skills, promote vision development and tracking, braile (if need be) and so many other things. Vision services have been a godsend for my daughter.

And please be aware, that as your son grows, you may see delays in gross motor, fine motor, and speech skills. Most of these things are based on vision and without being able to see the environment or other people doing these things, they do not learn as quickly to do them. And with the gross motor skills (crawling walking) not being able to see their environment, doesn't motivate them to explore. These are easily dealt with through physical therapy and occupational therapy and speech therapy.

I am not telling you this to dishearten you, I just wish someone had told me a little sooner some of the things to expect. And this way, knowing a head of time, if you think your son is becoming delayed in any area, you can get him evaluated and the appropriate services in place as soon as possible. If you have any questions, please feel free to ask.

I hope this helps, and please keep us updated. Keeping you and your little guy in my prayers.
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<div align="center">Thanks Alison's Mommy, SillyMama, Katarina and samylaine for my blinkies.</div>
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