What do you know about refractive amblyopia? (Dr. Hive?)

[Occasionally]

Today was my DS4's first visit to the optometrist--we have a *very* strong family history of nearsightedness and my older two already wear glasses, so we thought we were doing well to get him checked out now. He was a rock star through the whole thing, even with eye drops and that tough exam after they've dilated your pupils :coolgleamA:

 

I was told he has "refractive amblyopia." I've looked it up and understand that the brain is basically shutting one eye down because a large difference in vision (astigmatism is his case) makes it hard to coordinate both eyes together. We'll be getting out to order glasses very soon, and he'll wear them full-time, unlike his older siblings who are only supposed to wear theirs for distance. The optometrist seemed confident that this is all he'll need, but we'll check him again in 6 months and see if he needs to be patched after that.

 

I suppose what I'd like is to hear if anyone has any experience with this, and maybe some happy endings? Honestly, I'm pretty upset by it, and scared that even at less than 4.5 years old maybe it's been around for so long we can't get it corrected well. Maybe this is where I say I've had a longtime fear of going blind myself :(

 

Anybody? Many thanks!

[AK_Mom4]

Both of my two middle kids had it. DD was diagnosed at age 6 and DS was just 4yo. For DD, glasses were enough to bring the bad eye back up to speed. She outgrew wearing glasses at about age 10 when she stopped being so far-sighted and now has 20-20 vision.

 

DS on the other hand was pretty bad off. His bad eye had nearly shut completely down and he was seeing 20-200 (that means you can't even see hte big E clearly) and was legally blind. For him, we started a program of patching (on his good eye) and visual training on his bad one. We played a million games of slap jack, pick up sticks, all sorts of games to make him focus and use that bad eye. Oh, was he ever grumpy! It was very tiring for him and hard on all of us - he would just cry when we would put the patch on.

 

But it was worth it. We got his eye working again and he wore glasses for several years. Eventually, his eyes changed and he was able to stop wearing glasses. He is still far-sighted, but not enough to bother him reading and he doesn't need glasses to drive.

 

Definitely success stories here!

[klmama]

Be glad you caught it in time! Get those glasses this week, and don't worry too much. It may be that glasses worn daily at all times will be enough, but patching isn't the end of the world. It won't hurt, and he'll get to talk like a pirate for awhile. :001_smile: One eye may always be significantly better, but getting his brain to accept vision from the weaker eye is super important for depth perception, peripheral vision, etc. My niece also was patched at age 6, and she doesn't even need glasses now!

[solascriptura]

May I suggest a pediatric opthamologist? My daughter has been seeing one since she was a baby.

[Occasionally]

Both of my two middle kids had it.

 

Definitely success stories here!

 

Thanks--it's helpful to hear from someone who had to deal with this twice, and in slightly different ways. Glad they're doing well!

 

Be glad you caught it in time! Get those glasses this week, and don't worry too much. It may be that glasses worn daily at all times will be enough, but patching isn't the end of the world. It won't hurt, and he'll get to talk like a pirate for awhile. :001_smile: One eye may always be significantly better, but getting his brain to accept vision from the weaker eye is super important for depth perception, peripheral vision, etc. My niece also was patched at age 6, and she doesn't even need glasses now!

 

I don't think there's any possibility of not needing glasses, but only due to the family history of nearsightedness. Good idea about talking like a pirate if he needs to be patched! I think Mango languages has a Pirate option...

 

May I suggest a pediatric opthamologist? My daughter has been seeing one since she was a baby.

 

I was already thinking about this. I'm frankly also worried about my 2.5yo, and wonder if there's a genetic component (my DH had lazy eye, but I think it was strabismus. Not sure.)

 

Thanks for some reassurance and food for thought. Here I always thought he just wasn't up on his gross motor skills like my other kids. Maybe he seems more clumsy because he can't see right (sob.)

[Stayseeliz]

My 8yo was dx at 6 with severe amblyopia. Patching and contacts were the route we took with her. She is now doing occupational therapy to correct some issues the developed as a result of her basically learning to read, write, etc with no depth perception. She has a 6 point difference between her eyes.

 

My 4yo was dx at two with mild amblyopia. Glasses were enough for her. She had a point difference between her eyes when she was diagnosed. Now it's .75 difference.

 

We tried a pediatric ophthalmologist and that didn't get us anywhere but our optometrist who was knew a lot about amblyopia was very helpful!

[gardenmom5]

I have amblyopia, strabismus, etc. etc. - and the only good thing I can say about the treatment I received was it saved the eyesight in my left eye. the brain will shut off the signals from the weaker eye if they are too divergent. however, I've learned way more than I ever would have wanted to.

 

questions to ask about your son now:

do his eyes track together? (tracking is required to be able to read) If he uses the glasses full time will his eyes track together? what is the expected outcome with glasses? what should his eyes be able to do? what is the expected outcome if you need to do patching? what is the worst case scenario? what is the best case scenario? will he always have such divergent vision in his eyes?

 

questions to ask about the provider:

how many pediatrict amblyopia patients does s/he treat? are they a developmental optomitrist? (if not, run - do NOT walk - to a developmental optomitrist who specializes in this type of eye disorder.)

[lailasmum]

I think this is what my friends's kids had. She has triplets and 2 of them have vision problems. They did patching and wore glasses from when they were little up until recently. One of them now doesn't need glasses at all his vision has improved so much and the other does still wear glasses but of fairly mild prescription the treatment worked for them. They are 91/2 now.

[posybuddy]

I have one who was diagnosed with amblyopia at his kindergarten check up. We patched (which he disliked, but was mostly compliant) and he outgrew it around 10(?) years old. He will always have glasses and differences in vision from eye to eye, but then all three of my kids wear glasses, so that would probably be true for him regardless.

[Pamela H in Texas]

I took my kids for a vision check up last year before school started. They were 3, 4, and 5 at the time. Their paperwork said they were good until April 2012. I really can't explain WHY I took them, a hodgepodge of "reasons."

 

Anyway, the boys both came back with Amblyopia dxes. All three got glasses. All three were checked again in November and that is when the boys started patching (which we've been dismally bad at lately...gonna fix THIS MORNING!). They go back in November.

[Carrie12345]

My oldest's pretty much "corrected itself" with glasses alone. We never had to do patches or excersizes for him. He didn't get his glasses until 4.

 

I say pretty much b/c he does still need to wear them. If he goes too long (like, a week) without, the one eye starts to get weak again. But if he just takes them off for swimming or whatever, it's fine.

[Occasionally]

She is now doing occupational therapy to correct some issues the developed as a result of her basically learning to read, write, etc with no depth perception.

 

We tried a pediatric ophthalmologist and that didn't get us anywhere but our optometrist who was knew a lot about amblyopia was very helpful!

 

I'm almost curious to know if the glasses (we ordered them today!) will make a difference in his learning. Here, I was thinking he was a little slower to pick some things up, he probably can't see them well!

 

I have amblyopia, strabismus, etc. etc. - and the only good thing I can say about the treatment I received was it saved the eyesight in my left eye.

 

questions to ask about your son now:

do his eyes track together? (tracking is required to be able to read) If he uses the glasses full time will his eyes track together? what is the expected outcome with glasses? what should his eyes be able to do? what is the expected outcome if you need to do patching? what is the worst case scenario? what is the best case scenario? will he always have such divergent vision in his eyes?

 

questions to ask about the provider:

how many pediatrict amblyopia patients does s/he treat? are they a developmental optomitrist? (if not, run - do NOT walk - to a developmental optomitrist who specializes in this type of eye disorder.)

 

Thank you for the thoughtful response. Luckily, this isn't strabismus, and his eyes track together. There appears to be no problem with the muscles. In six months, after full-time glasses, we'll go back and see how well he's done (look at me sounding all positive!) Then we can decide about whether patching needs to happen. I was told we can probably get him to 20/25 with just glasses. I'll look into the optometrist's qualifications more, too.

 

I think this is what my friends's kids had. She has triplets and 2 of them have vision problems. They did patching and wore glasses from when they were little up until recently. One of them now doesn't need glasses at all his vision has improved so much and the other does still wear glasses but of fairly mild prescription the treatment worked for them. They are 91/2 now.

 

Great! I'm glad it worked out for them.

 

I have one who was diagnosed with amblyopia at his kindergarten check up. We patched (which he disliked, but was mostly compliant) and he outgrew it around 10(?) years old. He will always have glasses and differences in vision from eye to eye, but then all three of my kids wear glasses, so that would probably be true for him regardless.

 

Yeah, this is probably what I'm looking at in the future. He'll need glasses regardless, it's just getting those two eyes to work together again.

 

I took my kids for a vision check up last year before school started. They were 3, 4, and 5 at the time. Their paperwork said they were good until April 2012. I really can't explain WHY I took them, a hodgepodge of "reasons."

 

Anyway, the boys both came back with Amblyopia dxes. All three got glasses. All three were checked again in November and that is when the boys started patching (which we've been dismally bad at lately...gonna fix THIS MORNING!). They go back in November.

 

I hope it works out well for your guys! Sounds like your intuition helped get them diagnosed early, and from what I've read, the earlier the better.

 

My oldest's pretty much "corrected itself" with glasses alone. We never had to do patches or excersizes for him. He didn't get his glasses until 4.

 

I say pretty much b/c he does still need to wear them. If he goes too long (like, a week) without, the one eye starts to get weak again. But if he just takes them off for swimming or whatever, it's fine.

 

Thanks, good to know. I don't anticipate that he'll ever not need glasses, but it's interesting to know that the eye can get weak again quickly.

 

 

Thanks so much to everyone for responding! We ordered glasses this morning and he's excited to get them (thank goodness that DD and DS6 already wear them--it's like a treat to him!) With some action taken, I'm feeling more hopeful, too. Just finding out about it yesterday threw me for a loop. I still feel so sorry for the poor little guy, because I had no idea his sight was such a problem. That said, I've been noticing how well he copes, and don't know what to make of it. Does that mean it isn't too bad? Or does it mean that his brain has pretty much shut one eye down already?

[AK_Mom4]

OP, my mother had a very severe case of this as well. She went her entire life with glasses and basically not seeing from her "bad" eye. She drove cars, hunted, rode horses, taught school, worked with computers and basically did anything she needed to do.

 

Which is to say - it's not the worst thing. The brain does compensate though you could be in trouble if something happened to the good eye long term. It's better to correct it when the kids are little, before decades of brain activity is firmly set.

 

I'm glad your kiddo is excited about the glasses! That was our biggest difficulty - keeping glasses on my super-busy DS. We ended up buying more expensive frames because he was tough on glasses.

[Shelly in IL]

from a pediatric opthamologist. My son has this condition (he never crossed or wandered, though), caught it early and did some patching and he can now see well - but will always need correction.

 

Friend's son had what looked like a problem to me - always watching kids eyes after my son had it - and I mentioned getting him checked to her. She took him to her regular optometrist (another "friend") who said he was fine. She proudly told me so - think nyaa, nyaa. Well, a few years later, she came up to me and said her son definitely has eye problems, and they are hoping it isn't too late for him - he is now 11.5.

[Occasionally]

OP, my mother had a very severe case of this as well. She went her entire life with glasses and basically not seeing from her "bad" eye. She drove cars, hunted, rode horses, taught school, worked with computers and basically did anything she needed to do.

 

Which is to say - it's not the worst thing. The brain does compensate though you could be in trouble if something happened to the good eye long term. It's better to correct it when the kids are little, before decades of brain activity is firmly set.

 

I'm glad your kiddo is excited about the glasses! That was our biggest difficulty - keeping glasses on my super-busy DS. We ended up buying more expensive frames because he was tough on glasses.

 

Good to know that your mom could do anything she needed to do. And having two older siblings with glasses has definitely made it easier on him. I wonder if the optometrist thought I was nuts when I said to DS, "Guess what? You get to wear glasses now! High five!" :)

 

from a pediatric opthamologist. My son has this condition (he never crossed or wandered, though), caught it early and did some patching and he can now see well - but will always need correction.

 

Friend's son had what looked like a problem to me - always watching kids eyes after my son had it - and I mentioned getting him checked to her. She took him to her regular optometrist (another "friend") who said he was fine. She proudly told me so - think nyaa, nyaa. Well, a few years later, she came up to me and said her son definitely has eye problems, and they are hoping it isn't too late for him - he is now 11.5.

 

We're not being told that he's fine. I'm thinking about a pediatric ophthalmologist already. Yeah, mine will always need correction due to astigmatism. I had figured on that already. Hopefully your friend's son does well now that they know there's a problem. I read that there can be substantial improvements even when treatment doesn't start until age 14.

[Occasionally]

Definitely go to a pediatric ophthalmologist. :iagree:

 

My DH had eye surgery when he was about 10yo because of it. They didn't treat it early enough.

 

We caught my twins when they were 4yo. They patched their strong eyes for about a year and half, and that was all it took. They still wear glasses, however.

 

My youngest is currently being treated for it. He started in glasses at 2yo. He has patched since 4yo. His is a slightly different case because he also has ptosis in his weak eye. He had surgery just last week to correct it, so I'm hopeful that the patching will be more effective now.

 

Wait--are you talking about refractive amblyopia? From what I read, surgery isn't indicated with it like it can be with strabismus. Or did I miss something in what I've seen? His muscle function and tracking are fine--it's the fact that his eyes have such different abilities to focus that this is happening. If surgery were even something that we would be looking at for the future, I'd definitely get an ophthalmologist involved absolutely immediately. I'm just trying to make sure I understand that we're talking about the same thing.

[Carrie12345]

Wait--are you talking about refractive amblyopia? From what I read, surgery isn't indicated with it like it can be with strabismus. Or did I miss something in what I've seen? His muscle function and tracking are fine--it's the fact that his eyes have such different abilities to focus that this is happening. If surgery were even something that we would be looking at for the future, I'd definitely get an ophthalmologist involved absolutely immediately. I'm just trying to make sure I understand that we're talking about the same thing.

 

Our pediatric opt. DID mention that surgery could be a possibility when ds was fully grown, but we never went into depth about how that works, since he was just 4 at the time and had plenty of growing to do!

[Occasionally]

Our pediatric opt. DID mention that surgery could be a possibility when ds was fully grown, but we never went into depth about how that works, since he was just 4 at the time and had plenty of growing to do!

 

When fully grown makes me think it was something like LASIK that he was talking about to correct the difference between the eyes and make them more "even." Am I right? That would make sense, but maybe I'm missing something?

 

I joked with DH a while ago that we should put aside money for all the kids to get LASIK when they're fully grown. I felt badly that we've passed this terrible nearsightedness down to the kids (my eyes were about 7 diopters before LASIK; one of brothers is about a 10.)

[mom2att]

My dd got glasses at 2.5. We took her in because she was crossing her eyes to see. The glasses and a couple of rounds of patching fixed the crossing, but she will always need glasses. At 16 she just got contacts, and her vision and astigmatism are such that while the contacts correct her far vision, she still needs reading glasses for intense, close-up work. She just has really bad eyesight, poor kid. And her vision is significantly worse in one eye, so one contact has a stronger prescription.

 

But the patching wasn't all that bad. She doesn't even remember it, except for the fact that we have pictures of her with the patch on. They have some that fit like a sleeve over the glasses--we found these easier to deal with than the huge bandaid-over-the-eye type.

[stripe]

It is amazing what the brain can recover from, so do not lose hope.

 

Prevent Blindness Now has a fairly robust kids' forum

http://198.170.234.66/discus/messages/20/20.html?1347149828

[athena1277]

We just finished 4 years of patching with dd. Her bad eye was so bad she could only see the biggest picture on the chart at age 5. 4 years later, that bad eye is seeing about 20/30! She still wears glasses, but her doc says she may outgrow the need for them in her teen years.

 

Go to a good ped ophthalmologist. We wasted 6 months of treatment time with a regular optometrist who didn't know that the eye drops don't work if your child's vision in the bad eye is worse than 20/80.

[Carrie12345]

When fully grown makes me think it was something like LASIK that he was talking about to correct the difference between the eyes and make them more "even." Am I right? That would make sense, but maybe I'm missing something?

 

I joked with DH a while ago that we should put aside money for all the kids to get LASIK when they're fully grown. I felt badly that we've passed this terrible nearsightedness down to the kids (my eyes were about 7 diopters before LASIK; one of brothers is about a 10.)

 

I'm not really sure. At the time, his actual vision was pretty normal. It was just the eyes-working-in-tandem issue. But, like I said, it was just a passing comment at the time.

[Tiramisu]

I have amblyopia, strabismus, etc. etc. - and the only good thing I can say about the treatment I received was it saved the eyesight in my left eye. the brain will shut off the signals from the weaker eye if they are too divergent. however, I've learned way more than I ever would have wanted to.

 

questions to ask about your son now:

do his eyes track together? (tracking is required to be able to read) If he uses the glasses full time will his eyes track together? what is the expected outcome with glasses? what should his eyes be able to do? what is the expected outcome if you need to do patching? what is the worst case scenario? what is the best case scenario? will he always have such divergent vision in his eyes?

 

questions to ask about the provider:

how many pediatrict amblyopia patients does s/he treat? are they a developmental optomitrist? (if not, run - do NOT walk - to a developmental optomitrist who specializes in this type of eye disorder.)

 

:iagree:Definitely get the opinion of a good developmental optometrist. There is therapy to help with this.

[Occasionally]

Sorry, I sghould have been more clear - the surgery my son had last week was for the ptosis, not the amblyopia. But the two things are related because the amblyopia is partly caused by the ptosis.

 

My dh's surgery as a child was because he had amblyopia which caused his weaker eye to get lazy. Corrective surgery was required, from what I am told. He doesn't know much about it, and his parents have both passed away, so I'm not quite so sure of the details.

 

Oh, gotcha. That makes sense. And I'm probably going to have to talk to MIL to see what DH's real issue was when he was little. I think it was strabismus, because there's still a teeny bit of divergence you can see, especially when he's tired.

[Occasionally]

My dd got glasses at 2.5. We took her in because she was crossing her eyes to see. The glasses and a couple of rounds of patching fixed the crossing, but she will always need glasses. At 16 she just got contacts, and her vision and astigmatism are such that while the contacts correct her far vision, she still needs reading glasses for intense, close-up work. She just has really bad eyesight, poor kid. And her vision is significantly worse in one eye, so one contact has a stronger prescription.

 

But the patching wasn't all that bad. She doesn't even remember it, except for the fact that we have pictures of her with the patch on. They have some that fit like a sleeve over the glasses--we found these easier to deal with than the huge bandaid-over-the-eye type.

 

Luckily, we aren't dealing with any crossing, and the muscles appear to be functioning correctly. If we need to go the patching route, I'll keep the glasses sleeve in mind. Thanks!

 

It is amazing what the brain can recover from, so do not lose hope.

 

Prevent Blindness Now has a fairly robust kids' forum

http://198.170.234.66/discus/messages/20/20.html?1347149828

 

Thank you. Looks like I have some perusing to do.

 

We just finished 4 years of patching with dd. Her bad eye was so bad she could only see the biggest picture on the chart at age 5. 4 years later, that bad eye is seeing about 20/30! She still wears glasses, but her doc says she may outgrow the need for them in her teen years.

 

Go to a good ped ophthalmologist. We wasted 6 months of treatment time with a regular optometrist who didn't know that the eye drops don't work if your child's vision in the bad eye is worse than 20/80.

 

Good for your DD! The optometrist told me we can probably expect 20/25 correction after just wearing the glasses, but we'll have to see how it goes to determine if he needs patching. I think I read drops don't work well if the child is nearsighted (and he is.) Frankly, unpleasant as it is, I'd rather patch. I remember seeing something about the drops occasionally causing nodules in the eye (am I remembering that right??)

 

I'm not really sure. At the time, his actual vision was pretty normal. It was just the eyes-working-in-tandem issue. But, like I said, it was just a passing comment at the time.

 

Hmm. From what I understand, we're not looking at surgery. And this guy definitely doesn't have normal vision. He's nearsighted with astigmatism.

 

:iagree:Definitely get the opinion of a good developmental optometrist. There is therapy to help with this.

 

Thanks. We'll look into one.

[Stayseeliz]

My DD with severe amblyopia did struggle more to read than my son who doesn't have an eye issue. When we got her in glasses and started patching her reading took off. She's now up to grade level but hwe writing and stamina for reading is still suffering. That's why we're doing OT.