OT-Refractive Amblyopia

[wallawallakids]

My DD began patching therapy and wearing glasses at 18 months. I remember being concerned that she would not keep the patch on (because of her age) and the doctor offered an eye drop that would blur vision in the good eye. She did wear her patch with no problem. She had surgery at age 3 but continues to wear glasses. Her eyes are straight except when she's over-tired as another poster mentioned. She is 10 now and has one minor complication from the surgery, a very small tenon cyst formed over the area where the stitches were. It cannot be seen without pulling her eyelid back away from her eye and it causes no pain.

Also just an FYI - I don't know if the ophthalmologist will dilate your child's eyes but you may want to bring a pair of sunglasses for the ride home

Good luck tomorrow

Thank you! Good tip about the sunglasses! I will pack his Mickey ones.

 

[henry72]

I finally got DH to agree to take him in to see an eye doctor yesterday and we were both shocked with what he said. It turns out he has severe Refractive Amblyopia. His right eye sees 20/20 but his left is -10.5.

Has anyone else had a child with this? How did your child do with the treatment? Was it successful? Did they mind wearing the patch? Was it a fight to put on everyday? Did you use a reward system? Also, how long did your child need to do the therapy? The Dr I saw yesterday made it sound like we could be doing this on and off for the next 3 years!

Sorry for such a long, rambling post. I am just a nervous mom who want my little guy to be ok and I don't know where else to turn. Any help or insight at all would be very much appreciated. Thank you.

OK - didn't read all the responses but thought I would tell you my story. DD was also always very clumsy and would even sometimes walk into a wall! When she turned 4, they tested her eye sight at the pedi office and she didn't pass so they sent us to an ophthalmologist. It took us about a month to get into one that would see a child as young as her. The doctor said she amblyopia and had not been using her right eye for some time. He gave us glasses - which she hates. A few months later we started patching. I thought she would hate it but she loves it! We bought her pretty patches from Orthopad. (http://www.ortopadusa.com/)

She started with 4 hours a day which was easy to do when she wasn't at preschool. Two months later, it moved down to 2 hours a day. We did that for 6 months before going down to just half an hour. Her eye sight has approved so much in just a year!

We did have a reward system for wearing the patch even though she usually doesn't complain. When she had the longer time period, it helped to give her something to "keep going". DD really likes candy so I put small amounts in some bags and she can choose one of those or one of the small toys (dollar store or bargain bins or even cheap items picked up at the dollar store.) We actually bought her some pirate stuff in the beginning too. Below is my blog where I wrote about it. (I have written 2 updates after that too.)

http://susanleighnoble.wordpress.com/2012/08/13/ambloypia-turning-my-daughter-into-a-pirate/

I think kids are more resilient than we give them credit for. Good luck with your son.

 

[wallawallakids]

OK - didn't read all the responses but thought I would tell you my story. DD was also always very clumsy and would even sometimes walk into a wall! When she turned 4, they tested her eye sight at the pedi office and she didn't pass so they sent us to an ophthalmologist. It took us about a month to get into one that would see a child as young as her. The doctor said she amblyopia and had not been using her right eye for some time. He gave us glasses - which she hates. A few months later we started patching. I thought she would hate it but she loves it! We bought her pretty patches from Orthopad. (http://www.ortopadusa.com/)

She started with 4 hours a day which was easy to do when she wasn't at preschool. Two months later, it moved down to 2 hours a day. We did that for 6 months before going down to just half an hour. Her eye sight has approved so much in just a year!

We did have a reward system for wearing the patch even though she usually doesn't complain. When she had the longer time period, it helped to give her something to "keep going". DD really likes candy so I put small amounts in some bags and she can choose one of those or one of the small toys (dollar store or bargain bins or even cheap items picked up at the dollar store.) We actually bought her some pirate stuff in the beginning too. Below is my blog where I wrote about it. (I have written 2 updates after that too.)

http://susanleighnoble.wordpress.com/2012/08/13/ambloypia-turning-my-daughter-into-a-pirate/

I think kids are more resilient than we give them credit for. Good luck with your son.

Thank you for the link to your blog. Your DD is adorable. We have a lot in common! Daniel also had a stressful start to life and time in an NICU after birth. (He was 5 weeks early and ended up with a collapsed lung, chest tube, cardiac issues, and a feeding tube). Those early days were enough stress for a lifetime!

I love the fun patches that you got your DD! Thank you for the website link. I think there are quite a few DS would like and I think he would want to wear them. At least at first. He likes bandaids and so maybe the designs will make him more willing to try it. Hubby asked if they had cats because for whatever reason, he loves cats.

The idea about dollar store rewards is a great one. I am going to use that idea too.

I am so glad that your DD has improved so much. That gives me hope. I know his eyesight is really bad off right now. -10.5 means he most likely will not get to 20/20 but I can pray and hope for the best. Hopefully I will get some more definite ideas of what to expect with treatment tomorrow. Thank you again for the links. I am going to bookmark them for future use.

 

[arminnie]

A co-worker's son had an eye that needed to be "patched" and they used a black contact lens. The child was literally only a few weeks old and the contact worked best.

He's a grown man now (about 35). He wears glasses but is very, very accomplished.

 

[Maddle]

Good luck at the doctor appointment today. Please let us know how you made out.

I had this surgery when I was just shy of 8 years old. I am 55+ today, so that would have been in 1966...the Dark Ages. LOL. I think I was diagnosed when I was closer to my 7th birthday - pretty late in the game. I know they decided not to patch my eye - (which I thought was a good thing, but from reading PP I realize was a negative - I guess I was a kid who wasn't told very much.) I do remember the doctor telling my parents the surgery was for cosmetic reasons, and that the brain ignored the signals from the wandering eye.

I had the surgery over winter break, and I don't remember missing much school. I did not wear glasses...until I was about 11 years old when I was diagnosed as nearsighted. (The "lazy eye" was significantly more nearsighted, so maybe the doctor was waiting to see how it would respond.)

Over the years, it has only bothered me when I was very tired or sick. I think needing bifocals today is a bigger nuisance overall - and everyone goes through that sooner or later.

My parents were always very matter-of-fact about it with me, much like your husband is responding. Try not to set your son up to be sensitive about it - try to project your DH's attitude: "this is just something we have to deal with."

AND - Despite his "passing" you knew something was off and you acted on it. That is what good parents do - you acted on your instinct. Please don't beat yourself up about the diagnosis delay because you relied on the pediatrician and school eye tests.

Again, Good luck.

Maddle

 

[1000HappyWishes]

I had to wear a patch when I was in 2nd grade through 5th grade until 6th grade, when I got my glasses. I did face a bit of teasing, but that was only because I had switched schools that year in 2nd grade so I was new. Eventually, I just got used to it, and the other kids do. Some of the other ones who didn't like me did make fun of me, but the majority of the kids will accept it. Kids will have questions though, so you'll have to prep him to answer a few of them.

 

[wallawallakids]

Thank you for all the kind words and prayers from everyone. Today has been a very hard day. Daniel was a trouper and did really well considering how many tests they did and for how long we were there. (3.5 hrs.) He does indeed have severe Amblyopia. He will be patched for 6-8 hours a day and wear glasses at all times during the day. (He told me that in cases where the Amblyopia is severe and the child is older the longer the patch is on, the better chances of recovering some eye sight). The Dr. does not expect him to have much improvement with patching however, based on the fact that his left eyesight is so poor and he is a bit old for the diagnosis.

Our bigger issue is that they found a blood vessel that is leaking fluid on his retina and that is a much more serious problem. They are transferring us to a retina specialist at Mass General Ear and Eye in Boston. He needs to have surgery done to correct the problem and we are scheduled to get in there on Sept 12. I hate the idea of him having to have surgery and general anesthesia. It makes me so sick to think about it.

The Dr. did tell me that the retina issue is separate from his Amblyopia. He has probably had the amblyopia since birth. The retina issue appears to be new and only the specialist will be able to tell us why that is occurring now and what we can expect in the future. It just so happens that the retina problem is in the same eye as the Amblyopia. So now the waiting game begins until we can see the next doctor.

We ordered his glasses which he picked out (black Adidas) And we ordered his patches online which he liked picking out as well although he is already saying that he doesn't want to wear them. I am going to go to the dollar store like PP recommended and stock up on treats and surprises for him. He hated the dilation which was really sad. He is so easy going normally. I think this was the first day I have ever seen him really frustrated. I am sure we are going to see a lot more of that in these next few days, weeks, and months.

Overall, not the best news but I suppose it could be a lot worse too. Just praying that we get everything we need taken care of for him. I still feel guilty about everything he is going through but I am thankful I got him in when I did and didn't wait a second longer. Esp. with the retina issue. I am told waiting on that could lead to a detached retina which would be much, much, much worse then what we are going through now.

Thank you again for all your kind words. It is really helping me process through such a difficult time. Today has been hard but it is nice to come back here and read kind comments for my son. Thank you again.

 

[Samar]

Poor guy At this age, the kids in his class may think the patch is really cool (like a pirate) and you could even ask the teacher to incorporate a couple stories where the hero wears an eye patch if they do story time.

http://www.jacobseyepatch.com/book

Good luck on his surgery and on patching

 

[wallawallakids]

Poor guy At this age, the kids in his class may think the patch is really cool (like a pirate) and you could even ask the teacher to incorporate a couple stories where the hero wears an eye patch if they do story time.

http://www.jacobseyepatch.com/book

Good luck on his surgery and on patching

Thank you for the link to the book. That is a great idea. I am going to preorder him that. Thanks.

 

[Samar]

Thank you for the link to the book. That is a great idea. I am going to preorder him that. Thanks.

You're very welcome

 

[ktlm]

So sorry to hear how your day went. Poor little guy. I will keep my fingers crossed and say some prayers that he surprises you and really improves with the patching.

Very scary about the leaking blood vessel. Thank goodness they caught it before things got worse. At least it is in the bad eye if it had to happen. I hope they can figure out why it happened. Did he have any kind of sports injury or get poked in the eye with anything that maybe didn't seem like any big deal at the time, or do they think it was caused by something else? My friend actually had that happen as an adult due to an injury, but they didn't catch it until after the retina detached and it had to be surgically repaired. It is a really good thing they caught it now.

DD has been under anesthesia once for dental work (she has bad teeth to go with her bad eye- poor thing) and I know I was totally freaked out for the weeks leading up to it so I can imagine how you are feeling. So scary when your child has to go through something like that. I'll will also keep my fingers crossed and say some prayers that the surgery goes well, and that whatever caused it was something minor that won't cause any future problems. Sorry you are having to play the waiting game again. Maybe you will get lucky and pick up a cancellation there too.

Don't beat yourself up! It is hard to recognize an eye issue in a little one, when you don't have experience and know what you are looking for and they don't tell you they are having problems. We caught DD's because in photos one pupil (the bad eye) was going white and it looked weird so I got on the internet to see why that would happen. It commonly happens because they aren't focusing with the bad eye- but it can also show up due to a childhood cancer, so I about had a meltdown until they checked her eyes and told us it was just bad vision (which made me much less upset about the bad vision because the other alternative was a billion times worse). I actually caught my cousin's son's vision issues because I saw some pictures of him with one white eye- and said "I'm almost positive he needs glasses". They made an appointment for the next week, and sure enough he had a weak eye and needed glasses, and they caught it early enough that he didn't have to patch. They would have never noticed there was an issue if I hadn't known what I was seeing in the photo, and I would never have noticed if it hadn't been for DD. Plus, I can't believe your pediatrician and school checked his eyes and didn't catch the amblyopia. How were you supposed to catch it if they didn't? Plus, if you had caught it earlier, maybe it would have helped that, but what if he was in the stage where he only had yearly appointments and the bleeding vessel issue happened, and you had not caught that because it happened between appointments? I think it is really good thing they caught the retina issue when they did.

I hope he does really well, and to you too!

 

[wallawallakids]

Just got a call from the Dr. who has now had time to review his pictures. They think he has coats disease. But it looks like we have caught it early. So that is a HUGE blessing. It is only treatable in the first year or so. So now I am waiting to see if they will make is appointment sooner. I think the waiting is one of the hardest parts. It is so hard to wait. Thank you again for all your support. I am upset but I am trying to remember that it could be worse.

 

[MnMomtoboys]

Just got a call from the Dr. who has now had time to review his pictures. They think he has coats disease. But it looks like we have caught it early. So that is a HUGE blessing. It is only treatable in the first year or so. So now I am waiting to see if they will make is appointment sooner. I think the waiting is one of the hardest parts. It is so hard to wait. Thank you again for all your support. I am upset but I am trying to remember that it could be worse.

My son was dx with Coates at 13 months. And no not a typo you will find spelled both ways. We noticed around his first bday his eye was starting to turn in. It took almost 4 weeks to see our doc due to vacations. Ours first and then the Doc, we didn't think much of waiting since we thought it was just a lazy eye and the Doc was a friend of ours and Kevin knew him well. Surprise! One of the options was cancer so once we found out it was Coats we were pretty relieved.


Kevin is now 20 and has had 10 surgeries on his right eye. Sadly his is legally blind in his right eye but it doesn't slow him down. The only thing that gets to him is that he can't see in 3d.

Feel free to ask me anything.

 

[wallawallakids]

My son was dx with Coates at 13 months. And no not a typo you will find spelled both ways. We noticed around his first bday his eye was starting to turn in. It took almost 4 weeks to see our doc due to vacations. Ours first and then the Doc, we didn't think much of waiting since we thought it was just a lazy eye and the Doc was a friend of ours and Kevin knew him well. Surprise! One of the options was cancer so once we found out it was Coats we were pretty relieved.


Kevin is now 20 and has had 10 surgeries on his right eye. Sadly his is legally blind in his right eye but it doesn't slow him down. The only thing that gets to him is that he can't see in 3d.

Feel free to ask me anything.

Thank you for your help. I have read that coats progresses quickly but in stages. If you do not mind me asking, in your opinion how quickly did your son's coats progress from one stage to the next? Did they do laser surgery to try and stop the leakage several times? Should I expect multiple surgeries?

I am nervous about waiting the month to get into Mass General and plan on calling to be put on a wait-list there as well but don't know how much I should expect it to worsen in a month? They did say they have to rule out Retinalblastoma, which I can't even think about right now, but he seems old for that. So they told me they really think it is coats over that. The whole thing has me very worried. I tried looking information up about it online but it seems so rare and most of the information points to how unlikely it is to be able to treat it.

I am happy to hear that your son isn't slowed down by it. That is one of my biggest worries at this point. Will Daniel be able to drive and how will it affect him later in life? So it is a relief to hear that he should be able to go on and live life to the fullest even if he does loose all his vision in one eye.

From what I understand it isn't hereditary so I don't need to have my other children tested for it, correct?
Thank you for your help.

 

[Aliceacc]

I have absolutely no experience in anything close to the medical issue you're dealing with.

But I do have some input on the school issue.

I've found that kids, particularly young kids, tend to be OK with things they understand.

So in your shoes, here's what I would do: speak to his teacher. I'm assuming that Maine, like much of NY, hasn't yet gone back to school. Ask the teacher if she can spare you a few minutes early on to explain what is going on.

I second the idea of the book; it's the same one I was going to suggest. Ask if you can read the story to the class, then have a small discussion about your son and why he needs the eye patch. Or if she could incorporate the story and discussion into the first day of school somehow.

I did something similar when my son started kindergarten... read a story about adoption, and brought cookies to celebrate his "gotcha day." And the kids were fine with the fact that a Korean boy had a blonde mom and an Italian dad, because they understood it.

The best of luck to you as you deal with this.

Oh, and I just saw the post where you said you feel incredibly guilty about not noticing this on your own. And, to be honest, I don't think you're being fair to yourself. How on earth would you have picked up on this yourself? Cut yourself some slack. I know we each want the very best we can get for our kids, and that impusle to blame ourselves is a strong one. But the reality is that this simply is not something you could or should have been on the lookout for. So be thankful it was caught, and move onward.

 

[wallawallakids]

I have absolutely no experience in anything close to the medical issue you're dealing with.

But I do have some input on the school issue.

I've found that kids, particularly young kids, tend to be OK with things they understand.

So in your shoes, here's what I would do: speak to his teacher. I'm assuming that Maine, like much of NY, hasn't yet gone back to school. Ask the teacher if she can spare you a few minutes early on to explain what is going on.

I second the idea of the book; it's the same one I was going to suggest. Ask if you can read the story to the class, then have a small discussion about your son and why he needs the eye patch. Or if she could incorporate the story and discussion into the first day of school somehow.

I did something similar when my son started kindergarten... read a story about adoption, and brought cookies to celebrate his "gotcha day." And the kids were fine with the fact that a Korean boy had a blonde mom and an Italian dad, because they understood it.

The best of luck to you as you deal with this.

Oh, and I just saw the post where you said you feel incredibly guilty about not noticing this on your own. And, to be honest, I don't think you're being fair to yourself. How on earth would you have picked up on this yourself? Cut yourself some slack. I know we each want the very best we can get for our kids, and that impusle to blame ourselves is a strong one. But the reality is that this simply is not something you could or should have been on the lookout for. So be thankful it was caught, and move onward.

Thank you. I did email his teacher for next year in hopes she can help out and I plan on going in and speaking to the school nurse as well.

Thank you for your kind words. It's hard to not beat yourself up as a parent.

 

[Aliceacc]

Also, I imagine you've covered this, but does your son understand what's going on well enough to explain it?

I can pretty much promise that some kid, probably not in his class, will go up to him and ask about the patch. Not out of meannes, but out of simple curiosity. (6 year olds are like drunks; they have absolutely no inhibitions. One of my son's preschool friends, upon seeing me for the first time and expecting me to be Korean, asked: "Hey, is he your kid??")

So does your son have the words to explain the need for the patch? They need not be medically thorough, but accurate enough to get the idea across. Something along the lines of "This eye isn't working hard enough. So they had to cover up the other one, so the unpatched eye would make itself work harder."

 

[MnMomtoboys]

Thank you for your help. I have read that coats progresses quickly but in stages. If you do not mind me asking, in your opinion how quickly did your son's coats progress from one stage to the next? Did they do laser surgery to try and stop the leakage several times? Should I expect multiple surgeries?

I am nervous about waiting the month to get into Mass General and plan on calling to be put on a wait-list there as well but don't know how much I should expect it to worsen in a month? They did say they have to rule out Retinalblastoma, which I can't even think about right now, but he seems old for that. So they told me they really think it is coats over that. The whole thing has me very worried. I tried looking information up about it online but it seems so rare and most of the information points to how unlikely it is to be able to treat it.

I am happy to hear that your son isn't slowed down by it. That is one of my biggest worries at this point. Will Daniel be able to drive and how will it affect him later in life? So it is a relief to hear that he should be able to go on and live life to the fullest even if he does loose all his vision in one eye.

From what I understand it isn't hereditary so I don't need to have my other children tested for it, correct?
Thank you for your help.

Kevin drives. He has been driving about 4 years now, no tickets no accidents.

We had the cancer scare also. If you are on facebook there are a couple of groups on there and a couple of coats message boards.

They don't think its hereditary but I've been told my other 3 boys are more likely to get it than other kids. You need to have your other kids seen by a doctor. In fact all kids should have a eye exam before they go into kindergarten.

oh I forgot we think Kevin progressed pretty quickly. Since the first Doc was a friend he looked at Kevin's eye at church and didn't see anything horrible. We really just thought he had a lazy eye since both my dh and a couple of siblings on each side had dealt with it.

At the time Kevin was the youngest kid every to be dx with coats, and there was a couple of papers written about him. Sadly there have been a couple of kids born with this disease. Not sure why but its more common with boys than girls and most regular doctors will not know about Coats.

Get the other kids into an eye doc.

 

[SEA333]

I only skimmed the posts, so I apologize if I'm duplicating anything already said -

Kids at this age are soooo accepting. The best thing the teacher can do is to talk to your and your child openly about it, and ask your son how he would like her to handle it. A few choices could be:

"Do you want me to talk to the whole class and let them know that they are not allowed to "borrow" it, take it off of you, or ask you to use it? (this might help to make the patch unique - a "hot commodity", and we all know how kids want what other kids have! LOL)"

"Do you want me to compliment you on the pattern/picture you chose for the patch during reading group, and tell you a story about someone who picked a blue one, but got one with pink flowers and hearts instead? (this will help break the "elephant in the room" syndrome, and set the example of it being OK to talk about and ask questions)"

"Do you want me to not mention it at all, and just listen for anyone to say anything to you about it that you are uncomfortable answering, or work out a way for you to tell me if anyone is teasing you, so we can work together to solve the problem? (that way he will know the teacher has his back, and WANTS him to tell her what's going on - that it is not tattling)"

My son is going into 2nd grade, and his best friend had a patch last year and in Kindergarten (cataracts and a muscle weakness). None of the kids made fun of him, and honestly, DS never even thought it was strange! LOL he never mentioned it at all.

One other thing to ask the DR about when you go....I was a lab manager for several years for a huge Optical Retailer, and we often were asked to make lenses that were perscribed in a way that made it so that the good eye couldn't see out of the lens, making the bad eye have to work harder - the same concept as the patch. There are also translucent appliques that can be placed over the lens to prohibit sight. I believe there are also prescription eyedrops that blur the good eye and effectively do the same thing. Toddlers who refuse to keep the patch on are often given the eyedrops, but it's been a while since I was in that field, so I'm not sure if that is still an option.

Good luck!!!

 

[wallawallakids]

Kevin drives. He has been driving about 4 years now, no tickets no accidents.

We had the cancer scare also. If you are on facebook there are a couple of groups on there and a couple of coats message boards.

They don't think its hereditary but I've been told my other 3 boys are more likely to get it than other kids. You need to have your other kids seen by a doctor. In fact all kids should have a eye exam before they go into kindergarten.

oh I forgot we think Kevin progressed pretty quickly. Since the first Doc was a friend he looked at Kevin's eye at church and didn't see anything horrible. We really just thought he had a lazy eye since both my dh and a couple of siblings on each side had dealt with it.

At the time Kevin was the youngest kid every to be dx with coats, and there was a couple of papers written about him. Sadly there have been a couple of kids born with this disease. Not sure why but its more common with boys than girls and most regular doctors will not know about Coats.

Get the other kids into an eye doc.

Thank you. I made appointments today for the other 3 kids to be checked out. That way we know for sure although they only saw it on Daniel with dilation so I will have to ask about that when we go and ask if they should all be dilated. Thank you for your help.