What does Caleigh see? Can she see? How is her vision?
These are questions we get regularly and most of the time we tell people that she can see. Caleigh can see right in front of her. So if you get down on her level within arms reach she can see you. She is aware of your presence and if we walk out of the room she knows. We can hold her attention as long as the object is within arms reach. Usually she will do several glances instead of a long stare.
Caleigh has Cortical Vision Impairment or Cortical Blindness. She gets services through DARS, a state program, which has a vision department. CVI is basically a miss communication between the eyes and the brain. Caleigh's brain injury is the problem. The physical components of her eyes are fine.
Now explaining this and then having your child not look at you, but see that you are there is another question. It's hard to explain. Caleigh will look at something....turn her head...and then reach, grab and succeed in getting that something. She's incredibly accurate with that method. She also makes eye contact too. Just depends. A lot of kids with CVI see through tunnels, or only peripherally, or with one eye. As of now we aren't sure if Caleigh has any of these characteristics. They also have preferences for color. Caleigh doesn't like red, but loves the color blue. She even acts like red isn't there when given the choice. Green and yellow are other favorites.
When outdoors Caleigh will hold her head down. Almost as if she is overwhelmed. She doesn't do well with sunlight, keeping her eyes closed most of the time, but she does fine with artificial light.
We went to the eye doctor back in January before all the TPN stuff happened. This is the same eye doctor that wanted to do strabismus surgery on Caleigh's eyes. We didn't want the surgery because her eyes are not always crossed. Only when she is focusing on something do they cross. The last few times we checked in with him he recounted his need to do the surgery saying that her eye crossing is just her trying to see. Basically she looks at the tip of her nose.
So when he dilated her eyes he discovered that Caleigh is near sighted. Just like her momma. The last time her eyes were dilated she was far sighted like a newborn would be. Now we know. Just like we tell everyone, Caleigh can only see within arms reach of herself.
So here's the new snafu....
The eye doctor is not suggesting glasses for Caleigh's near sightedness. He acted like he was doing us a favor by not having us get them. He didn't even really say why and he wants to check her again in a year. A YEAR. I guess I'm not ok with that. I questioned him and he said that we could get the glasses if we wanted too. No biggy. Our choice, huh?
I've talked to a lot of people about this with varying degrees of opinions.
Caleigh's therapists, for the most part, are all for the glasses. Maybe she will want to creep further if she can see further. Maybe she will reach for toys with more precision. Maybe she will hold her head up longer if there is more to see.
Caleigh's vision therapists really didn't help me with the situation. I was interested in what they had to say, but didn't have high hopes. Good thing, I got nothing.
I've talked to other parents too. It was explained to them that you don't want to over correct a developing eye. For instance if Caleigh's vision is that of a 8 month old and we give her glasses, then her eyes will not continue to develop on their own. They will rely on the glasses from now on. Makes sense, but at the same time you don't want to wait around with the rest of the development if you can help with glasses.
If we get glasses this would be another thing to deal with. Another appointment. Another obstacle. Another accessory. But if we can further Caleigh's development it would be worth those things. Right?
I'm interested in your opinion....So what would you do?
These are questions we get regularly and most of the time we tell people that she can see. Caleigh can see right in front of her. So if you get down on her level within arms reach she can see you. She is aware of your presence and if we walk out of the room she knows. We can hold her attention as long as the object is within arms reach. Usually she will do several glances instead of a long stare.
Caleigh has Cortical Vision Impairment or Cortical Blindness. She gets services through DARS, a state program, which has a vision department. CVI is basically a miss communication between the eyes and the brain. Caleigh's brain injury is the problem. The physical components of her eyes are fine.
Now explaining this and then having your child not look at you, but see that you are there is another question. It's hard to explain. Caleigh will look at something....turn her head...and then reach, grab and succeed in getting that something. She's incredibly accurate with that method. She also makes eye contact too. Just depends. A lot of kids with CVI see through tunnels, or only peripherally, or with one eye. As of now we aren't sure if Caleigh has any of these characteristics. They also have preferences for color. Caleigh doesn't like red, but loves the color blue. She even acts like red isn't there when given the choice. Green and yellow are other favorites.
When outdoors Caleigh will hold her head down. Almost as if she is overwhelmed. She doesn't do well with sunlight, keeping her eyes closed most of the time, but she does fine with artificial light.
We went to the eye doctor back in January before all the TPN stuff happened. This is the same eye doctor that wanted to do strabismus surgery on Caleigh's eyes. We didn't want the surgery because her eyes are not always crossed. Only when she is focusing on something do they cross. The last few times we checked in with him he recounted his need to do the surgery saying that her eye crossing is just her trying to see. Basically she looks at the tip of her nose.
So when he dilated her eyes he discovered that Caleigh is near sighted. Just like her momma. The last time her eyes were dilated she was far sighted like a newborn would be. Now we know. Just like we tell everyone, Caleigh can only see within arms reach of herself.
So here's the new snafu....
The eye doctor is not suggesting glasses for Caleigh's near sightedness. He acted like he was doing us a favor by not having us get them. He didn't even really say why and he wants to check her again in a year. A YEAR. I guess I'm not ok with that. I questioned him and he said that we could get the glasses if we wanted too. No biggy. Our choice, huh?
I've talked to a lot of people about this with varying degrees of opinions.
Caleigh's therapists, for the most part, are all for the glasses. Maybe she will want to creep further if she can see further. Maybe she will reach for toys with more precision. Maybe she will hold her head up longer if there is more to see.
Caleigh's vision therapists really didn't help me with the situation. I was interested in what they had to say, but didn't have high hopes. Good thing, I got nothing.
I've talked to other parents too. It was explained to them that you don't want to over correct a developing eye. For instance if Caleigh's vision is that of a 8 month old and we give her glasses, then her eyes will not continue to develop on their own. They will rely on the glasses from now on. Makes sense, but at the same time you don't want to wait around with the rest of the development if you can help with glasses.
If we get glasses this would be another thing to deal with. Another appointment. Another obstacle. Another accessory. But if we can further Caleigh's development it would be worth those things. Right?
I'm interested in your opinion....So what would you do?
9 comments:
Holly--I have so much to say on this topic that I could literally write a book.
Our doctor recommended no glasses until we get to a point where Charlie's eyes aren't changing any more. He's also fine with Charlie's eyes crossing when he's concentrating because Charlie's eyes registered very similarly as far as prescription goes, which means that he's using them equally.
The stronger Charlie gets--the better his vision gets--I think a lot of vision issues in CP kids is related to muscle weakness and motivation.
Also, I've found some really great activities for improving eye contact on some of the autism web sites.
I think the Dr.'s in that practice are great...but we ventured out for a second opinion too. I can give you another great PO in Dallas if you'd like a second opinion. Sometimes hearing the same thing from 2 different Dr.'s helps.
Personally, I'm partial to babies in glasses :)
I don't know, Holly. I see both sides (one of my faults I guess).
Since my daughter has had glasses since she was just 4 mo. old I guess I am more for them than against them. They have only helped us. She too has perfectly healthy, 'good' eyes but her brain doesn't communicate with them properly, mainly her right eye.
Have her glasses helped? Yes. The FIRST eye to eye smile I got from her was seconds after we put her first pair of glasses on. She clearly saw me and I'll never forget it. At 4 months old both of her eyes wandered, eyes never in the same zip code. Immediately after glasses, they remained straight for a little over a year and she immediately reached for everything. She came alive.
We then noticed at around age 1 and half that her right eye began to stay inward. We monitored it and tried forms of patching for a good 6-8 months to no avail so we opted to surgerically straighten it. Surgery has been a success...eye is straight and we know she is trying to use this eye again because she turns her head slighty to face this eye forward.
Our doc explained that when a brain doesn't receive a clear picture because one eye is not as close to straight as possible then the brain will default to the stronger of the 2 eyes. In our case, right eye was 'shutting' down because left eye was sending a clearer image to her brain. Surgury put an end to that and now it seems both eyes are now a team again.
As you know, it can change. That's when the prescription may change and we just stay on top of it like everything else.
About the sunlight, Oia is the same way...her eyes seem sensitive and we try to play outside with the sun against our backs as much as possible because of this. She won't keep shades on her face!
Good luck, this is a tricky one. May need a 2nd opinion from another eye doc.
wow, the way you described how Caleigh looks at something & then looks away to reach for it? Just like Little Man. I got him an eye exam through InfantSee and the dr. gave him a very thorough, 2 hr. long exam. She cam up with "nothing wrong with the eyes themselves, but vision (or lack of vision) is not clearly defined at this time, however he is more nearsighted than a typically developing 8 month old (his age at the time)". His EEG came up with "left eye is slower to comunicate than right eye". I'm on the fence about glasses. I'll be taking him to a pediatric neuro-opthomologist some time around his 2nd birthday since that is when time & money will be available:)
Holly, get a second or even third opinion--if for only to ease your mind. You surely don't want to miss the 'window' for surgery (for a developing eye), yet you don't want to delay glasses if they can help your daughter.
Maybe this doctor isn't the right "fit" for you and Caleigh.
I don't understand why they wouldn't want her to see better. That's a very confusing comment by your doctor, I think. Sorry. I read but don't comment. I'm not sure why I commented on this one. I guess that doctor's flippant suggestion just irritated me.
Holly. I am really curious...did the eye doctor say how nearsighted Caleigh is? Do you know the numbers? Both of my girls were "nearsighted" for quite a while before we felt it was significant enough to be developmentally appropriate to prescribe glasses.
When they were babies most of the "stuff" they were interested in was close to them anyhow, so we didn't correct (with glasses) until it seemed like it might be interfering with them doing what they needed to be doing developmentally. Holland was 2 1/2 when she got her glasses, because this was right about the time she started walking and venturing out more. Eden didn't get glasses until she was 5 and in preschool.
Eden is nearsighted (-2 and -2.5) but doesn't like to wear her glasses. She tells me that she sees fine without them and doesn't need them. The doctor verified this with some vision testing and said it was okay for her not to wear them. So, we are going to look at it again this summer.
Holland, on the other hand, is SO nearsighted that she HAS to wear her glasses. She never complained about them and has actually ASKS for them since she got them.
So, I think severity of the nearsightedness, as well as where Caleigh is developmentally make a big difference. One thing that wouldn't hurt is to try them and see if SHE prefers to wear them or not. My experience is that if they REALLY need them, they will want to wear them.
Anyway...that's just my two cents. We don't have experience with CVI, so take it for what it is worth:)
Billie
Just getting a leeetle concerned about you and Caleigh, since you haven't posted in a while. Barbara
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