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  #1  
February 25th, 2008, 07:07 AM
fiefer87's Avatar Mega Super Mommy
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Do your kids have enough sight to eventually drive?
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  #2  
February 26th, 2008, 09:27 AM
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Right now I know Nathan has enough sight to drive... WITH his glasses. He sees really well in both eyes for the first time now! But, with the ROP there is still the chance of the blood vessels growing abnormally and detaching his retina SO there is still the possibility of going blind... they say it changes a lot when they get close to the teen years because of hormone changes and growth spurts....
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  #3  
February 26th, 2008, 11:54 AM
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We are not sure yet! Most people with Albanism cant drive, they are extremly light sensitive and light damages their eyes further. When I get his glasses I will see how much better he reacts to things, and maybe be able to tell at this point if his vision is corrected enough. My dad has this also and he can drive, but that is rare, so hopefully Josh got that gene and he can drive also!
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  #4  
February 26th, 2008, 01:29 PM
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Alexis probably wont be able to drive, right now she is roughly 20/150 - 20/200 corrected, so just under legally blind. We upped the prescription on her glasses, so hopefully she be better, but I don't think she will ever be able to drive.
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  #5  
February 28th, 2008, 01:42 PM
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Hi I just found you guys, this is my 1st post here...

But both my children who are ages 6, and 2 have glasses.
My son had a +9 and +9.5 prescription now & was said to have a +11, when he 1st got his glasses, but he started off at +8 and they just upped his prescription, and said he hasnt improved much in 2years....

I think my daughters is a +5 or +6 but was said to have +8 when she 1st got glasses and said she would start off lower.(same with my son, chad)

My son (6) got his @ the age of 4 and they are questioning weather or not he will be able to drive, they say with the way he is sees right now he wil not be able to drive, which scares me! The doctor says they are going to do a test to see if his nerves are working correctly in Boston. But she is saying that if they aren't(the nerves) working correctly then basically his vision will not improve, and he will not be able to drive and he will probably be considered legally blind.. I am so scared to find out. My daughter has had hers since she was 14mo old and she is almost 21/2 now. I am hoping that her vision is a little better. They both get the gene from there father, since he had glasses as a child

Has anyone had that test done? I'm not sure what the do, but I know it is to see if his eye nerves are full formed and working correctly, she said that he is hooked up to a bunch of wires.
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  #6  
February 29th, 2008, 09:19 AM
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Oh forgot to answer your question on the other intro post. When we checked the optic nerves for my dd, what they did was in the opthalmolagists office. They dilated her pupils and then used some sort of glass (maybe magnifier?) to look directly into her eye to see the retina and optic nerve. Hers was textbook underdeveloped. After that, they sent us for an MRI to see the rest of her brain to rule in/out the SOD. Kids with SOD have classic brain structure abnomalities (an absent septum pellicidum and usually some abnormalities in the corpus callosum, though not always). The MRI also visuallizes the optic nerves, optic chiasms, and can tell more about them using the MRI. Alexis has had 2 of them.
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  #7  
March 1st, 2008, 06:45 AM
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Quote:
Oh forgot to answer your question on the other intro post. When we checked the optic nerves for my dd, what they did was in the opthalmolagists office. They dilated her pupils and then used some sort of glass (maybe magnifier?) to look directly into her eye to see the retina and optic nerve. Hers was textbook underdeveloped. After that, they sent us for an MRI to see the rest of her brain to rule in/out the SOD. Kids with SOD have classic brain structure abnomalities (an absent septum pellicidum and usually some abnormalities in the corpus callosum, though not always). The MRI also visuallizes the optic nerves, optic chiasms, and can tell more about them using the MRI. Alexis has had 2 of them.[/b]
my kids have not had the MRI yet... Maybe they should... I think I might mention that to the doctor when I see her..
I think they have done that (optic nerve test) for both my children also, and they didnt mention anything.. Unless I'm mistaken?

my DS's test he is going for, he needs to be hooked up to wires? I need to call her (the doctor) anyway because she wants to wait til summer for the test, but I cant wait. mainly because it affects his schooling, she siad we would have to adjust schooling accordingly.. I do not know what that means really, she said something like gettting large print books etc. So I will not have enough time to do that if we wait until the summer to find out..
She said they in 2 yrs he hasnt improved, and she doesnt know if it is because he doesnt cooperate well enough during the visit, because he wll be looking all around, instead of wear he needs to be, and thats why she wants to do the test, but she seems to lean more towards there being nerve damage.. We are also wondering if he has ADHD and this could be his cooperation issue in the chair.. so who knows...
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  #8  
March 1st, 2008, 07:08 AM
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Ok, it sounds like they maybe want to do an EEG (electroencelpholagram)? If that is what they want to do, they place electrodes on various parts of the head and they are hooked up to machine that records brain activity. If they are looking for nerve damage, that might be the test they are doing. Alexis has had 2 EEGs done, one to look for subclinical seizures and one after she fell and got a concussion. The test itself wasn't bad, but they need to fall asleep during it so you have to "sleep deprieve" them and that meant not letting her sleep after midnight since her test was at 9 am. That was pretty rough. I would definately recommend getting it moved up, especially if they think that he may need special ed or other things. Most IEP meetings for special services occur at the end of the school year, and if he requires large print or anything there will be plenty of time for the school district (because they will have to provide them) to acquire them in time for school. It also can take a few weeks to get a meeting set up and the school district may want to evaluate him themselves (all part of the process usually). Alexis has been in special ed since before preschool, so if you have any questions about that I should hopefully be able to answer them.
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  #9  
March 3rd, 2008, 04:38 PM
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Ok, it sounds like they maybe want to do an EEG (electroencelpholagram)? If that is what they want to do, they place electrodes on various parts of the head and they are hooked up to machine that records brain activity. If they are looking for nerve damage, that might be the test they are doing. Alexis has had 2 EEGs done, one to look for subclinical seizures and one after she fell and got a concussion. The test itself wasn't bad, but they need to fall asleep during it so you have to "sleep deprieve" them and that meant not letting her sleep after midnight since her test was at 9 am. That was pretty rough. I would definately recommend getting it moved up, especially if they think that he may need special ed or other things. Most IEP meetings for special services occur at the end of the school year, and if he requires large print or anything there will be plenty of time for the school district (because they will have to provide them) to acquire them in time for school. It also can take a few weeks to get a meeting set up and the school district may want to evaluate him themselves (all part of the process usually). Alexis has been in special ed since before preschool, so if you have any questions about that I should hopefully be able to answer them.[/b]

Thanks, I do think that is the name she said for the test, it sounds a little familiar. He is six, it is going to be so hard for him to fall asleep if that is the case..lol How old was Alexis? Thanks so much for your help. I am going to call his doctor in the morning to see of she can move the appointment so he can get the test done sooner, just in case. I am also going to ask the name of the test just in case it is not this one. He goes to a private school right now, do you know if they can make the neccesary changes, like large print, or does only public do that?
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  #10  
March 4th, 2008, 07:45 AM
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Alexis was 4 when we had the EEG done on her. She could not sleep past midnight for a 8 or 9 am test. They will give you a sleep regimen to ensure that the kids can fall asleep during the test. She did pretty good, though it took her almost 45 min to fall asleep because of the wires (they can only go so far with them on).

I am not sure how it works for the private schools. We were looking into that at one point, but we didn't get very far because she is so delayed she needs a special ed class. None of the private schools around her offer special ed classes so we went with the special ed class in our public schools (which is a phenomenal class). I would recommend looking into your COmmission for the Blind and Visually IMpaired (or something similar) in your area. They have case workers for the kids and they can better answer those questions. I don't know the answer just because we have never dealt with it.

Let us know how the phone call with the doc goes. Also, if you haven't check out the Learning Disabilities and Special Education board (I host that one too, but hopefully one of the other moms may know the answer to private vs public schools and who provides) and the Moms of gradeschoolers and Moms of Toddlers (I think that would be where your dd falls into). They are great boards and we have a lot of fun on them.
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  #11  
March 4th, 2008, 01:47 PM
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So I called the Doctor today. She said the name of the test is Visual evoked response (VER or sometimes called VEP), she said it was much like an EEG(which you had mentioned)I found this link to better explain. http://www.eyemdlink.com/Test.asp?TestID=33.

This was also taken from: http://www.sparrow.org/neuro/neuro_ver.asp

What is a VER test? (Visual Evoked Response)
This is a test of your visual system to see how well it is working. It specifically evaluates your optic nerves with signals going down the visual pathway. The computer adds them up and creates a waveform for your doctor to view. To get these signals you have to watch a T.V. screen with a special checkerboard pattern on it tht is moving.
Why do people have VER’s?
Some common symptoms patients have when they come for this test are: double vision, blurred vision, eye injuries, head injuries, weakness of eyes, arms, legs, and decreasing vision, etc.
Does a VER test hurt?
No, the test is not painful. All you do is watch a T.V. with reversing checkerboards during the test.
Can you sleep during a VER?
No. It is very important that you be wide-awake and alert for this test. Even drowsiness can affect your test results, making them appear abnormal when they may actually be very normal.
What do VER’s show?
VER’s tell us about the health of your visual system and if there is any damage or problems that might be the cause of your symptoms. The VER is part of an “internal” check of the visual system. This is the part that is located in the brain. Your eye doctor checks the “external” factors of your vision.
The wave form, shape, size and when it happens are what the doctor looks at to determine whether or not there is a problem in your visual system.



This link here is from his actual hospital, it is the VEP which I think is just another name for VER the "P" standes for potential and the "R" stands for response. I think this is the test he will have since this is taken right from his hospital he will be going to.
http://www.childrenshospital.org/clinicals...sublevel40.html


She said this is a test to see what he is capable of seeing, his potential vision, if it will improve or if the way he is seeing now is it. She said if this is his full vision then he wont be able to drive seeing the way he is now. The test is to measure the brain waves, nerves, etc to see if there is any reason why he is is not seeing better (ex- brain, nerve damages) and if he has room for improvement. As far as the schooling and large print goes, she said she isnt concerned for that now, because he was only entering 1st grade and the words tend to be large anyway. She is mainly stating this in case he need it in the future. SHe says his (close up vision ihas improved since she 1st saw him 2 yrs ago and it is bad, but not too bad, but it is his vision seeing far away that was worse off. (even though he has a + # for his prescription, I don't really understand that portion) So she said it wouldn't matter for schooling yet. She says we should leave the appointment for May to see her and then have the appointment for Boston. SHe also says he is awake during the procedure, whuch will be easier on my end...lol So I guess we will have to wait and see..

Thanks again for all your information, very helpful.. Also Do you know about this procedure, she is talking about?

PS here is my updated sig. Of the kids.. these were pics taken recently....
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  #12  
March 5th, 2008, 08:33 AM
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Yeah, Alexis had one of those done right after the optic nerve hypoplasia was diagnosed. I forgot about it until you mentioned it. For her they wanted to see if there was any nerve function at all, since her nerves were so underdeveloped. It was really simple and took about 20 minutes I think. And was much much easier than the EEG. We found out that the left eye had better potential, but neither eye was super great. At least his doc isn't thinking about changing school stuff right now, so that is good news. And this will give you a better idea of whats going on. i would still start looking into the public vs private school thing so if and when the times comes to make modifications to his books and things, you know who does what and if you can get it through his private school.
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  #13  
March 5th, 2008, 02:38 PM
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Quote:
Yeah, Alexis had one of those done right after the optic nerve hypoplasia was diagnosed. I forgot about it until you mentioned it. For her they wanted to see if there was any nerve function at all, since her nerves were so underdeveloped. It was really simple and took about 20 minutes I think. And was much much easier than the EEG. We found out that the left eye had better potential, but neither eye was super great. At least his doc isn't thinking about changing school stuff right now, so that is good news. And this will give you a better idea of whats going on. i would still start looking into the public vs private school thing so if and when the times comes to make modifications to his books and things, you know who does what and if you can get it through his private school.[/b]
Thanks I will probably call his school tommorrow to ask if they make such changes. You have been a big help with this whole thing, I appreciate it!
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  #14  
March 6th, 2008, 08:16 AM
fiefer87's Avatar Mega Super Mommy
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No t a problem, I just wish I had someone when we started this whole thing. I am just really glad that I can help other moms through some of this. I know what a big help it can be.
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