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Forum: Children with Vision, Hearing & Sensory Issues

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  #1  
November 20th, 2011, 07:44 PM
ZeliaMarie
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Hello, my name is Heather. I am one of the Hosts of the July 2010 PR. My son is 14 months old. At his 6 month well baby check up his doctor recommended that we take him to a pediatric opthamologist because it appeared that his eyes were not working together. After the visit with the specialist Caleb was diagnosed with alternating exotropia. His eyes where out turning at 70 degrees. Since the out turning was so severe there was a concern that if left untreated it would affect his vision. So at 9 months he had his first surgery on the inner muscles of both eyes..and at 12 months he had a second surgery this time on the outward muscles. Now at 14 months he will need a third surgery. We are seeking a second opinion but it is obvious that he will need another surgery.

I have been put through Hell and back emotionally. Most things I have been able to deal with but the one thing I'm having the hardest time with right now is strangers and the things they ask and say. People are so clueless and ignorant sometimes. Caleb loves to wave at strangers and say, "Hi" so of course sometimes they will come over to talk with us. I can't tell you how many times a complete stranger will ask me if I have him seeing an eye doctor, what's wrong with him, if he's delayed...and so many other questions. Sometimes I answer them, sometimes I want to punch them.

Those of you with a LO who has a health concern that is visual, how do you cope with strangers and their questions? Yesterday I had the kids pictures done with Santa. The lady handed me my picture and I could see that Caleb's right eye was turned all the way in. She made a comment about it and I lost it right there in the mall and cryed like a baby. I fear that if we can't get this fixed he will be labeled in school...and kids are so cruel. If I can't handle strangers how can I teach him how to handle them?

Sorry to ramble..it's been a long week...
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  #2  
November 23rd, 2011, 08:41 AM
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poor thing. i am so sorry I didn't ese this till now!
I was check out a second opinion as well. From my experience one surgery is all that is needed. my Opth said he has never had to redo an eye muscle surgery. BUT it is common to need a second, but so close togethr is weird. Have you had to patch at all? It seems some eye therapy is needed for your sweet boy.

As far as looks go, yes we have had them all as well. Avery was 4 months old and diognosed with bilateral cataracts (both eyes) and nystagmus(shaking of the eyes) she also had what is called true strabismus (both eyes crosed in but used equally) she has binocular vision) So she has had 2 surgeries at 4 months for hte cataracts, one at 11 months for the strabismusm 2 for lensectomies (scar tissue in the eyes) and an EUA (exam under anesthesia) she is going in next week for her 7th eye surgery and in 3 weeks for an 8th. So we have been there with surgeries. Her eyes can get pretty bloody after surgery so we have had many comments, or when she trips on a step, she is legally blind and people laugh when she runs into something, or give her dirty looks, yes a 2 year old) if she won't look at them when they try to talk to her form 10 feet away, she can't see them!!!
As I was saying, seems your little one could bendefit from some eye therapy maybe, better then surgery in my opinion, surgery is just.. well surgery! maybe it is needed though I don't know, but I would get another opinion and see what they say about it.
Does your son also have vision problems? I would wonder if putting prescription glasses on him would help with the turning as well.
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  #3  
November 23rd, 2011, 02:37 PM
ZeliaMarie
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Thank you for your reply. His vision has been tested and it is 20/20. I was told patches will not work because it's different than a lazy eye. His brain and muscles aren't making the connection. His form of strabismus is exotropia. I agree that a second opinon is probably a good idea. We are trying to get him into one of the leading hospitals in our area but they can't fit him in until February... but yeah surgery is hard and if a second opinon says a patch or eye therapy may work I'm all for trying it.

I'm sorry that your LO has been through so many surgeries. I thought 3 surgeries where hard, I couldn't imagine 8. Poor baby.
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  #4  
November 23rd, 2011, 04:57 PM
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I would wait till feb. then. That is crazy it takes so long to get in though. When I needed to go to an opth, we were seen in 2 days. When I told them the problem. We then were sent somewhere else and it took 3 weeks. There has to be another ped. opthomologist in your area.
Also did they say he has 20/20 or did they just say his vision is normal? I ask because he should not have 20/20 at his age. Children do not develope 20/20 till around 8 or 9 years old. At 2 I beleive teh normal vision is 20/50 I could be slightly off though, it's jsut from memory.
It seems, just from what you say, that the first doctor messed it up. If he had surgery to correct, with binocular vision, they should have been able to correct it. When the vision is different in each eye, is when surgery becomes much harder and less predictable.
Keep me updated on what the second opinion says.

and thank you, she is a stron little girl!
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  #5  
November 23rd, 2011, 08:38 PM
ZeliaMarie
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No, he did not say he had 20/20 vision. He said something along the lines of, "His vision is right were it should be". Which I just assumed meant 20/20. I didn't realize that they didn't have 20/20 at this age. The Doctor has said he's ot sure why his eye keep turning back out. After each surgery his eyes seem to be aligned perfectly..I mean in reality they aren't perfect but they are a lot closer. At his follow-up appointment after his last suergy they were at 20 degrees...not they are back to 40. It seems like the surgery works then the muscles relax and they start to turn again.

I'm in no hurry to have another surgery. At this point the doctor wants to, for the second time, work on the in pulling muscles. (so that would be once on the out pulling and twice on the in pulling) I feel like somethings just not right with that..plus I worry about scar tissue and all the other things that come with surgery.

I live close to Baltimore so I'm just going to wait it out until February and take him to The Wilmer Eye Institute at Johns Hopkins. My biggest fear is that in order to "fix" his eyes we end up doing more harm than good. You're right though in that it's crazy how long you have to wait. I guess since it's not an emergency...

Here's my little guy at 2 months old, before any of his surgeries:



Here he is now after 2 surgeries...oh and my daughter LOL. You can see his one eye still turning in but it is a lot better than it once was.
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  #6  
November 24th, 2011, 07:16 AM
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well he is gorgeous, and so is she!!
That is what I figured about his vision, when yo said 20/20. The eyes are not deveolped, also there are two different acuities. There is near vision and far vision. And both will get their own acuity. Like Avery's near vision (with correction) is 20/40 but her distnace vision is around 20/200. So she can see close up but not far away. With corrections it flips, she is like 20/200 with distance but 20/300 near. That is all about to change though. I have no idea to what but change.
I would for sure wait and talk to the others, have heard good things about John hopkins.
I woner if it has to do with the way the first doc did the surgeris. avery;s were crossed in and he did both muscles on both eyes. Inside and outside. I don't know how that all works though.
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  #7  
November 27th, 2011, 06:03 PM
challowell's Avatar Mega Super Mommy
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Location: Caldwell, Ohio
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Hello. Im Christina and My 2 year old has strabismus with intermittent extropia. Her eye turn was 45 degrees. This was what Jamie's eyes looked like before surgery.

After surgery her eyes were straight. This was in July. It is now at 15 degree turns again but they are going to wait 4 months to recheck to see if it will stay the same or get worse. You can see a current pic in my siggy. We get the what is wrong with her eyes and people thinking she is retarded all the time. We ignore it unless they are asking a legit question. Jamie is not bothered by it yet but we are going to tell her as she gets older that is more important things than looks.Hopefully it will get better for you. I would also get a second opinion. The eye doctor I got for her right now is good about giving us the risks and rewards of surgery and told us to begin with that these eye surgeries are temporary. They will help untill the muscles restrenghten and start to pull again. It is a nerve problem and not a muscle problem so the brain needs to retrain.
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  #8  
January 10th, 2012, 01:10 PM
Kittynoah's Avatar Mega Super Mommy
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Location: St. Louis
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My daughter has a uni-lateral cateract and PHPV in her right eye. That eye has started to turn in because the brain is not connecting with it. We are doing patches and she wears a contact in that eye (because she no longer has a lens). I usually come up with a smart aleck response if anyone says anything ignorant. But if they are just actually curious as to why she wears the patch, I tell them.

From what I understand, it is quite normal to have to do several "tweaking" surgeries on the muscles to get the eyes right. Julia will need a muscle surgery later on to straighten her eye but we aren't really worried about it now - we are more worried about trying to gain vision in her affected eye.

I'm a little surprized they aren't patching - because that seems to be the normal treatment.
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