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Developmental Vision issues vs. visual acuity


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I was wondering if anyone was willing to post here regarding their experiences with these things.  I know this comes up a lot and there is a lot of confusing information out there.  Maybe if there is one thread where this is posted about and links provided it might make research easier for others.

 

I also wanted to emphasize that a child can have 20/20 eyesight or better and still have Developmental vision issues that may not even seem to show up as vision issues.  Most optometrists and ophthalmologists don't seem to have any training in assessing developmental vision issues.  Certainly my kids passed all eye exams with flying colors for years (DD now needs glasses for nearsightedness and astigmatism) but DS has a plethora of vision issues that do not show up in a normal exam.  Me, too.  Eye doctor after eye doctor didn't even know how to CHECK for the issues we have.  It has taken a long time to find a doctor with real answers (we just got back - had to go 4 hours away) but the experience has been amazing.  I will post details later if anyone is interested but I wanted to see if others wanted to share their experiences...?

 

 Or questions they would like to ask?

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Great idea for a thread.

 

I have no research to contribute, but my kids have both done vision therapy for convergence insufficiency and/or tracking issues. One has 20/20 vision, and the other has a visual development lag because glasses came "late" when he was four.

 

So, first thing, I would note that kids should be screened even as infants via the http://www.infantsee.org/ program. If my son had been screened this way, he would probably not have basically two lazy eyes! He would still have an astigmatism (a pretty strong one), but having glasses very early would have probably prevented the "incomplete visual development" part of this that gives him a lag in his acuity. (He can't be corrected to better than 20/25 right now!) I don't think this would have prevented the covergence and tracking problems.

 

Both of my kids had some convergence issues. Those things seem to have gotten better from a combination of exercises completed for vision therapy, a number of which worked on the Moro reflex and potentially some other retained primitive reflexes. There seems to be a big correlation between ocular motor issues and bilateral coordination/retained reflex problems. I have no data for this--this is our experience and is strengthened by talking with the COVD optometrist. A lot of the things that help integrate reflexes are things like cross crawling, tummy time, not spending a lot of time in car seats, etc. as infants. My kids did what they are supposed to but still somehow have retained reflexes. The retained reflexes can go along with other developmental issues too (ID, coordination disorders, etc.). I have heard that one theory about the non-integrated reflexes is that babies born by c-section or who were born after short, relatively easy labors are more susceptible to not integrating reflexes because they don't get as good of a start during the birth process--one purpose of the reflexes is to position babies in different ways as they are born. I had short labors with both kids, so it's consistent with our experience. 

 

Anyway, vision therapy not only helped our kids vision, but it was like getting very focused occupation therapy as well (we've done OT, and VT had more far-reaching and profound effects than OT!). My older son's swimming improved exponentially after VT. His swimming teachers were shocked at the difference. My younger son suddenly discovered his core muscles after having VT. OT strengthened a lot of things for him, but he still didn't naturally use his core muscles (couldn't do sit-ups and things like that, w-sat all the time). Now, he can spontaneously do sit-ups, and his w-sitting is less (he has to be reminded to not do it, but he does sit in a bigger variety of positions now that he can be stable in those other positions). Nearly everything has improved with VT for him. (And he had a very short course of VT.)

 

Neither of my kids presented with strong, conventional symptoms at first. One presented with strabismus. The other one was complaining about homework to the point of tears every time he had to pick up a pencil to write (this was also partly the reflexes--he had some reflexes retained that made handwriting really hard). The COVD had been screening him, but he could pass the test well enough to not tip in the direction of therapy. For both boys, they compensated well until their eyes were fatigued, and the optometrist had to fatigue their eyes during exam to provoke symptoms. Then, they fell apart! 

 

That is my very unscientific experience. 

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I also wanted to emphasize that a child can have 20/20 eyesight or better and still have Developmental vision issues that may not even seem to show up as vision issues.  Most optometrists and ophthalmologists don't seem to have any training in assessing developmental vision issues.

 

 I will post details later if anyone is interested but I wanted to see if others wanted to share their experiences...?

 

 

:iagree:

 

I would love to hear how your exams went. It sounds exciting!

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:iagree:

 

I would love to hear how your exams went. It sounds exciting!

Have a moment so I will post a bit.

 

Me:  

1.  I have had wonky vision, including seeing not one but two distinct images plus a "ghosted" image offset from each primary image, for quite a while.  I see these extra images in each eye, not just when both eyes are open.  Glasses help the images to be clearer but there are still basically 4 images, sometimes a 5th, when both eyes are open.  I also have an astigmatism and am nearsighted, but that is not causing the ghosting.  

 

2.  This eye doctor worked with two other eye doctors to do a full battery of tests.  It was honestly fascinating during the 2+ hour review after the full day of testing to be able to actually SEE how my eyes were functioning.  They could show me the playback of what I was looking at from second to second and how my eyes were tracking together and what each individual eye was doing.  I have a ton of things that aren't functioning well with my eyes.  I can go into details if someone wants but basically there were many things causing issues and fatigue.  Being able to talk with someone very knowledgeable, who took a lot of time to walk me through it all, and insists I can call or email at any time to ask additional questions, PLUS has a plan to actually help improve my vision, is such a relief.  Whether the plan will work or not is another story, but I am hopeful.

 

DS:

1.  The eye doctor is dsylexic AND has developmental vision issues.  She was very understanding of what I described as issues for DS.  The battery of tests they ran on him was even more extensive than the ones they ran on me, but they were so encouraging and supportive he made it through everything.

 

2.  Results?  He has Convergence Insufficiency, Stereopsis (Defective with Fusion), Ocular Motor Dysfunction (deficiencies of Saccadic Eye Movement), Ocular Motor Dysfunction (deficiencies of Pursuit Eye Movements, and Accommodative Dysfuntion.  Also, his iris does not close rapidly enough and tends to spasm (which is why he is so light sensitive).

 

Basically, DS has 20/20 vision but his eyes do not work correctly at all.  Glasses won't help.  This is all in the functionality of the eye, not the visual acuity.  Watching the play back of his eyes trying to follow along on a page or hit a target or basically ANYTHING was shocking.  His eyes are struggling every second they are open, even though it really isn't something visibly noticeable if you don't know what you are looking for.  In fact, for some tests his functionality was so low it didn't even register on their chart.  And at one point one eye was so off from the other eye that his brain sort of disconnected the "scanning" eye and stopped using it altogether.  His eyes are in a constant state of fatigue.

 

She was showing that his decoding skills are at least at a 7th/8th grade level, possibly 9th or higher, but his visual functionality is so inefficient reading and everything else is a constant strain.   She isn't sure he is even dyslexic (keep in mind she IS dyslexic AND has developmental vision issues).  She does think he is highly intelligent and has found ways to compensate. 

 

3. Recommendation?  10 months of Vision Therapy.  After that we will see...

Edited by OneStepAtATime
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I took youngest DD to a COVD for a normal eye exam and she did a basic screening. We're now doing a trial of glasses to see if that is enough. DD was supposed to do the binocular vision exam May 11th but I had to cancel that when her cochlear implant surgery got scheduled fir May 6th. So now we will most likely do it in the fall.

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I am really glad to hear that you have some hope of your vision improving.

 

The issues your son has are all things that my kids worked on in vision therapy, except the issues with the iris. It sounds very encouraging! 

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I took youngest DD to a COVD for a normal eye exam and she did a basic screening. We're now doing a trial of glasses to see if that is enough. DD was supposed to do the binocular vision exam May 11th but I had to cancel that when her cochlear implant surgery got scheduled fir May 6th. So now we will most likely do it in the fall.

Good luck on the surgery and big hugs of support. 

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I am really glad to hear that you have some hope of your vision improving.

 

The issues your son has are all things that my kids worked on in vision therapy, except the issues with the iris. It sounds very encouraging! 

Loved all three eye doctors, especially the primary one.  She was awesome.  And very hopeful.  I needed the hopeful part after seeing just how severely dysfunctional poor DSs eyes are.  

 

I knew there was something wonky from the time he was little.  He has always had trouble with eye hand coordination.  When we finally had an evaluation with a local developmental optometrist (at the urging of people here) it was confirmed that DS had heterophoria but that really wasn't the whole picture.  The eval locally was nothing compared to what we did this past week.  Like literally nothing.  The doctor took 15 minutes to examine DS, then had very little in the way of explanation or support.  DH didn't even really believe him, TBH.  DH would get so upset that DS still asks for help with things like pouring hot water into another container or trying to pour juice into his glass or any number of little things.  Now he seems to understand DSs issues better after this incredibly detailed evaluation.

 

Interestingly, with the first eye doctor that actually diagnosed a developmental vision issue, DS did do "vision therapy" 2 years ago.  It caused him to have massive headaches and he was utterly miserable the whole time.  We never finished and the eye doctor wasn't actually working with DS at all, nor did he follow up with anything or monitor his progress or give us any feedback.  It was all computer based.  When I described the system to this current eye doctor she literally got tears in her eyes.  She was horrified and said that program is designed for periodic maintenance AFTER a full VT program where the eye doctor is actually working with the patient and monitoring their progress.  She apologized for the lack of knowledge and support from her colleague.  

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OneStep, this is awesome!  I am so glad that you were able to get the testing.  

 

So what is the plan for VT?  How are you going to manage with school?  Did they test your DD?

10 months of VT recommended for DS and 8 months for me. Unfortunately, I don't see how we can swing both right now.  DS is more severely impacted in a lot of ways so I would rather focus on him.  Amazingly, they were able to come up with a glasses prescription for me that actually helps with the ghosting, so I am hopeful that the new glasses will keep me more functional right now.  

 

We are going to wait to get DD evaluated until we have more money.  She is doing well with her glasses at the moment.  She doesn't have the coordination issues that DS  does (and actually her eye hand coordination, gross and fine motor skills, are all strong) so I suspect she is not dealing with the extreme deficits he is.

 

The big issue is that we are 4 hours away.  My van won't hold up for multiple trips every month to a city 4 hours away.  Our plans are really in flux right now for how to handle this.

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Here's my question ----- how do you know when you need to see a developmental Optometrist? 

 

I had all three of my big kids examined earlier this year --- all three needed glasses. (one far sighted, two near-sighted) This was a comprehensive exam by my own eye doctor, who gives the most thorough exam I've ever experienced. (I've worn glasses since I was in 1st grade)

 

One of my sons had issues tracking. I SAW it on the exam -- when the doctor was testing Adam, I saw Adam's eyes struggling to follow -- sort of like nystagmus. My doctor told me that his eyes are struggling to focus, so the tracking suffers as a result. He assured me that with wearing glasses, this will correct itself. 

 

I'm wondering if we need to see a developmental Optometrist? I mentioned vision therapy to my doctor, who poo-poo'ed the idea. 

This is common with eye doctors.  There seems to be a strong resistance between the professions to accept that developmental vision issues are different from visual acuity issues and may need a different approach.  In fact, locally I had two eye doctors tell me there is no such thing as developmental vision issues.  (One also told me that there is no such thing as dyslexia, only indulgent parents and lazy kids.)  They are not willing to accept the new research and data.  The one developmental vision doctor here has little real experience but at least he acknowledged that DS had something else going on besides visual acuity issues.  His suggestion besides the computer based stuff he dumped on DS was to just give him prism glasses (this for a child that has 20/20 vision).

 

The woman I finally took us to is highly regarded, is a Fellow, and has won numerous awards.  Her experience/knowledge/abilities are like night and day compared to what we had found locally.  She was showing me that glasses will help some with certain developmental vision issues but that rarely does a developmental vision issue just correct itself.  Glasses help with the visual acuity, but depending on the DV issue, won't really do anything to address the DV issue.  SOME developmental vision issues do not respond well to VT, though, and glasses may be the only answer.  She was uncertain until the exam whether DS would benefit from VT or not, or if glasses would be our other option.

 

For some developmental vision issues, a solid VT program can definitely make a significant impact in the functionality of the eyes (but after VT the patient may need on-going "maintenance" exercises at home so as not to lose ground).  She was honest when we talked on the phone that she wouldn't know for certain if she could help DS or me until after the full exam.  She told me that if it were certain things she admitted VT might not be an option.  When we were reviewing the data she seemed genuinely thrilled that the issues DS was having could be turned around with solid VT, and felt pretty confident that 10 months would make a significant impact but is hoping it will be shorter.  She also told me flat out that glasses would not help at all right now.  His vision is still 20/20.  

 

The other thing she was saying was that we should hold off on a full neuropsych evaluation or OT because his eye sight issues are going to skew the results.  She recommended the 10 months of VT, then seek out additional evals to see what else he may be dealing with (and to confirm or refute his dyslexia diagnosis).

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I'll put a little of our story here, it's still a work in progress :)

 

DD is 8 and complained of seeing double/blurred at age 6. We took her to a regular eye doc, who said that one eye is stronger than the other and this likely happens when she is tired. She has 20/20 vision and he just basically sent us on our way to deal. I heard about VT here so we took her back in Dec for a screening with a COVD doc. He said she definitely has convergence insufficiency and recommended 12 weeks of in office therapy. Unfortunately we had to move right before she was set to start.

 

Once here, I took her to another COVD doc, and this one solely focuses on visual rehabilitation. She did a much more intense initial battery test, a Nova test, a Visagraph and something else I can't recall. We got a 3 page report, that took an hour phone consult to go over. In addition to convergence insufficiency she found

 

Accomodative Spasm, Left Eye

Saccadic Dysfunction

Pursuit Dysfunction

Visual Disturbance, Visual Midline Shift

Ambient Dysfunction

 

Her ocular motor system is weak (what makes the eyes move and track together), focusing at near and far distances is impaired, binocular system's ability to turn the eyes in and out when looking from near to far, mildly weak peripheral awareness and a few other things. They recommended 16 weeks, a computer system at home, and was close to $4000. This was 4x the cost of our initial consult  :mellow:

 

So after we picked our faces up off the ground, my husband and I thought it best to seek a third opinion. How odd, that both options were so drastically different? The therapist admitted that her case wasn't the worst they had seen, that 16 weeks is the minimum anyone goes there, and that over time, she may even outgrow this. I was a bit shocked to hear that, however, the fact is at this very moment she does not see well, reading is incredibly fatiguing so we have to do something. She may also have dyslexia on top of this. 

 

We went to our third doc last week. My DD loves her, she is super super nice. She did a very..I mean very..brief exam, she knew this was the third place we'd gone to, and agreed with convergence insufficiency. However she very much wants to do another test that will tease out just how much her vision is effecting her processing. She is very interested in the results of the school evals we had done, so I scheduled our follow up for after we hopefully have them back. She does not want to make up a treatment plan until she knows exactly what she needs. She mentioned using a metronome and such, so I'm kind of geeked out about that  :laugh:

 

Anywho, I'll update in a few weeks what her plan is, and how it is going. I just posted to say, do your due diligence if at all possible and shop around? I don't think our second opinion was wrong in any way, perhaps overblown a touch, but since most of these folks are outside of insurance coverage, at the end of the day we have to eat too  :p

Edited by Joyful Journeys
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So after we picked our faces up off the ground, my husband and I thought it best to seek a third opinion. How odd, that both options were so drastically different? The therapist admitted that her case wasn't the worst they had seen, that 16 weeks is the minimum anyone goes there, and that over time, she may even outgrow this. I was a bit shocked to hear that, however, the fact is at this very moment she does not see well, reading is incredibly fatiguing so we have to do something. She may also have dyslexia on top of this. 

 

We went to our third doc last week. My DD loves her, she is super super nice. She did a very..I mean very..brief exam, she knew this was the third place we'd gone to, and agreed with convergence insufficiency. However she very much wants to do another test that will tease out just how much her vision is effecting her processing. She is very interested in the results of the school evals we had done, so I scheduled our follow up for after we hopefully have them back. She does not want to make up a treatment plan until she knows exactly what she needs. She mentioned using a metronome and such, so I'm kind of geeked out about that  :laugh:

 

Anywho, I'll update in a few weeks what her plan is, and how it is going. I just posted to say, do your due diligence if at all possible and shop around? I don't think our second opinion was wrong in any way, perhaps overblown a touch, but since most of these folks are outside of insurance coverage, at the end of the day we have to eat too  :p

 

I have heard about different approaches to the exams, including the Visagraph. Our experience was more in line with your first and third consults. The therapy we did involved some metronome work as well. 

 

Visual rehabilitation--that is an interesting term. I wonder if the place that does this has more equipment and more nuanced testing because they do a wider variety of therapy?

 

The only other reason I can think why places vary so widely in screening is maybe that some practitioners feel better having computerized testing or maybe they have a big enough patient load that they have to do some testing with computers and things (Is the doctor present for the Visagraph testing, or is it done with an assistant and then reviewed by the COVD?). Anyway, from what I've heard people talk about, I am not sure the absence or presence of some of the sophisticated testing/cost is necessarily a make it or break it for good therapy--people have good therapy or poor therapy with both kinds of testing and price point (from what's been said on the boards in the past).

 

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I have heard about different approaches to the exams, including the Visagraph. Our experience was more in line with your first and third consults. The therapy we did involved some metronome work as well.

 

Visual rehabilitation--that is an interesting term. I wonder if the place that does this has more equipment and more nuanced testing because they do a wider variety of therapy?

 

The only other reason I can think why places vary so widely in screening is maybe that some practitioners feel better having computerized testing or maybe they have a big enough patient load that they have to do some testing with computers and things (Is the doctor present for the Visagraph testing, or is it done with an assistant and then reviewed by the COVD?). Anyway, from what I've heard people talk about, I am not sure the absence or presence of some of the sophisticated testing/cost is necessarily a make it or break it for good therapy--people have good therapy or poor therapy with both kinds of testing and price point (from what's been said on the boards in the past).

Bingo. The computerized tests were done after the covd did the initial battery, and those were done with an assistant. Then the actual therapy would be done with another gentleman entirely. We wouldn't have seen the covd again unti after her therapy was done. The computer work at home seemed neat? They could have exact measures to know that practice was done at home. But that's a huge part of the cost, nearly a thousand bucks. I know that we could get her practice in without it since we homeschool, yet that wasn't an option.

 

Despite the third being brief, she has such a joyful personality and connected with my dd right away. And the fact that she wanted to see exactly where the breakdowns in processing were occurring? Fascinating. She does all the therapy so she builds the relationship with her VT families directly. I hope the cost overall is similar to the first one as that is much more doable for us.

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One of the things I loved about the evaluations that DS and I went through was that it was done by three optometrists, including the primary optometrist, not just techs, and every single one of them was pleasant, supportive, patient, knowledgeable, experienced and kind.  DS actually enjoyed some of it and even when he had some significant pain (iris wouldn't close properly so the light shining in his eye was very painful) they were soooo understanding, not angry, frustrated or impatient.  They worked as a team, and then reviewed together all the results before the primary COVD wrote up the report and presented it to me.

 

I also loved the free 45 minute phone consultation with the main COVD before we even attempted evals, plus the over 2 hours of discussion she and I did after evals.  She was great at explaining and making me feel very comfortable.  She also understood my "ghosting issues" something not one other eye doctor understood ever.  She was also extremely encouraging of my calling or emailing at any time if we had questions or concerns.  There was no pressure whatsoever to sign a contract or start anything.  She wanted us to have time to process through everything and talk it over.

 

I also loved that the main COVD is dyslexic and has similar vision issues to DS so she was very understanding of the journey the kids and I have been on.  She was also really fascinated by and very supportive of our choice to homeschool, something I have not gotten from ANY professional where we currently live.

 

Overall, this was the best vision exam we have ever, ever had.

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Bingo. The computerized tests were done after the covd did the initial battery, and those were done with an assistant. Then the actual therapy would be done with another gentleman entirely. We wouldn't have seen the covd again unti after her therapy was done. The computer work at home seemed neat? They could have exact measures to know that practice was done at home. But that's a huge part of the cost, nearly a thousand bucks. I know that we could get her practice in without it since we homeschool, yet that wasn't an option.

 

Despite the third being brief, she has such a joyful personality and connected with my dd right away. And the fact that she wanted to see exactly where the breakdowns in processing were occurring? Fascinating. She does all the therapy so she builds the relationship with her VT families directly. I hope the cost overall is similar to the first one as that is much more doable for us.

 

I hadn't thought about the computerization giving them more structure and homework compliance (and maybe more specific measures of progress). That's an interesting angle. Our therapy was more analogous to OT related specifically to the eyes--individualized goals with progress measured at the expertise and call of the therapist. (However, that probably means they aren't doing clinical studies on patients since it's very different from one to another.)

 

Our COVD doesn't do the therapy, but she coordinates with the therapist and does a check every 5 or 6 weeks--that data feeds back into the plan. If the therapist can't be there, the optometrist does fill in though. 

 

They pretty much tell people that homework makes all the difference, but I think it's hard for parents to see their kids hit a wall and continue to push past it or to know if their kids are doing things properly. I know that while VT was easy for me to understand and see, but it's really hard for me to achieve that same level of understanding about my son's speech therapy--that's a mystery to me. I can't wrap my head around it. I bet there are parents that feel about VT the way I do about speech, and maybe the computerized stuff helps them see it or stay compliant. I know technology extends providers to be able to help more people, but then it has to be paid for. That's just true across the board with healthcare.

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Overall, this was the best vision exam we have ever, ever had.

 

It sounds like a great experience! I am still jumping up and down excited for you. This is such a potentially big deal for you guys! I hope you can work out the really big pieces of logistics. Oh, and I'm glad the testing made things evident to your DH. It's so helpful to have both parents be able to see and understand what's happening! 

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It sounds like a great experience! I am still jumping up and down excited for you. This is such a potentially big deal for you guys! I hope you can work out the really big pieces of logistics. Oh, and I'm glad the testing made things evident to your DH. It's so helpful to have both parents be able to see and understand what's happening!

Thanks kbutton. Me too. :)

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One of my sons had issues tracking. I SAW it on the exam -- when the doctor was testing Adam, I saw Adam's eyes struggling to follow -- sort of like nystagmus. My doctor told me that his eyes are struggling to focus, so the tracking suffers as a result. He assured me that with wearing glasses, this will correct itself.

This is where we are at with my little one. She had difficulty tracking and the glasses may or may not be enough. There was also a question as to whether she understood that she was supposed to be following with just her eyes and not moving her whole head. So there is now a "practice visual tracking" goal in her Applied Behavioral Analysis therapy.

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So ...... do you think an exam with a COVD would be helpful? We're dealing with an 'unofficial' diagnosis of dyslexia and very likely dysgraphia as well for both of my twin boys, and perhaps some sensory issues, etc. I'm piecing all of this together bit by bit, since a psychological eval would be expensive for one child, much less two. 

 

So far we've done the eye exam and ended up with glasses, a hearing exam - which was normal, a language arts screening at a local dyslexia school that gently suggested dyslexia and dysgraphia, an IQ test with a psychologist to rule out issues with working memory and processing speed, and the latest, an OT eval last week. 

 

I guess I don't understand what a developmental vision issue is. My boys have never complained of double vision, blurry vision, etc, so I was floored when they needed glasses. (although I am horrifically nearsighted and have worn glasses since age 6)

There are many different things that can be wrong with someone's vision that are different than visual acuity.  For some, it can mean double vision.  That isn't the only thing, though.  FWIW, my son has never ever said he has double vision.  It is hard to know if he actually does or not since he may not know the difference.  His eyes have probably never worked together effectively.  

 

One of the things that my son struggles with is keeping his eyes tracking together.  One eye moves one way and the other eye moves a different way.  It is not usually visibly noticeable.  However, watching his eye movements being tracked electronically then it became painfully obvious that he cannot track across a line of text or look directly at an object with both eyes at the same time or really anything else.   They move differently, so the visual input he is receiving is confusing.  It explains why he has never been very coordinated, hates having to pour things, in fact feels very insecure with a great many things that require solid visual input.  It also at least partly explains why he did better in karate once his instructor started blindfolding him.  It eliminated the confusing visual input.

 

He did great with his standard eye exams, though, because his visual acuity is 20/20.  Each eye "sees" just fine.  The other issues did not show up in a standard eye exam.

 

As for whether an evaluation through a COVD would be useful for you, I am uncertain.  

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So ...... do you think an exam with a COVD would be helpful? We're dealing with an 'unofficial' diagnosis of dyslexia and very likely dysgraphia as well for both of my twin boys, and perhaps some sensory issues, etc. I'm piecing all of this together bit by bit, since a psychological eval would be expensive for one child, much less two. 

 

So far we've done the eye exam and ended up with glasses, a hearing exam - which was normal, a language arts screening at a local dyslexia school that gently suggested dyslexia and dysgraphia, an IQ test with a psychologist to rule out issues with working memory and processing speed, and the latest, an OT eval last week. 

 

I guess I don't understand what a developmental vision issue is. My boys have never complained of double vision, blurry vision, etc, so I was floored when they needed glasses. (although I am horrifically nearsighted and have worn glasses since age 6)

 

Note that sensory issues may also underly developmental vision issues.  When I say sensory issues, I mean issues with the central nervous system that impact things like muscle tone and proprioception and general motor function.  For the eyes to work together properly, motor function is involved.

 

IMO it's at least worth chatting with a COVD to discuss whether a full developmental vision eval is warranted (e.g. at a regular annual vision checkup).  A number of symptoms overlap with dyslexia or may be comorbid.  For that reason, I would be reluctant to assume any suggested unofficial diagnosis.  I'd get the psych evals as well as rule out vision issues.  Knowledge is power :)

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10 months of VT recommended for DS and 8 months for me. Unfortunately, I don't see how we can swing both right now.  DS is more severely impacted in a lot of ways so I would rather focus on him.  Amazingly, they were able to come up with a glasses prescription for me that actually helps with the ghosting, so I am hopeful that the new glasses will keep me more functional right now.  

 

We are going to wait to get DD evaluated until we have more money.  She is doing well with her glasses at the moment.  She doesn't have the coordination issues that DS  does (and actually her eye hand coordination, gross and fine motor skills, are all strong) so I suspect she is not dealing with the extreme deficits he is.

 

The big issue is that we are 4 hours away.  My van won't hold up for multiple trips every month to a city 4 hours away.  Our plans are really in flux right now for how to handle this.

 

That's so exciting that they had an immediate option to help your ghosting!!  Yay!!!

 

Four hours is a long way.  Can you go once a month or every other week and be given lots of homework?  I've done 2 hours each way for speech, and I just can't imagine 4.  You need a hotel for that.  That's EXPENSIVE!!  That has to be cut down to every 3-4 weeks with lots of homework.  It's just too much.  Or go stay there for the summer.  But at least you found someone you feel really confident has enough knowledge to help!!!  Any chance you might go for the summer?  

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(((OneStep)))  It's super frustrating to have finances get in the way of therapy.  We're wrestling with that too.

 

I don't have time to post right now, but I will share that our ds turned out not to be dyslexic. 

 

Wow, it will be interesting to hear more!  So how did he get the diagnosis before?  Was the test they used largely dependent on vision?

Edited by OhElizabeth
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Here's my question ----- how do you know when you need to see a developmental Optometrist? 

 

I had all three of my big kids examined earlier this year --- all three needed glasses. (one far sighted, two near-sighted) This was a comprehensive exam by my own eye doctor, who gives the most thorough exam I've ever experienced. (I've worn glasses since I was in 1st grade)

 

One of my sons had issues tracking. I SAW it on the exam -- when the doctor was testing Adam, I saw Adam's eyes struggling to follow -- sort of like nystagmus. My doctor told me that his eyes are struggling to focus, so the tracking suffers as a result. He assured me that with wearing glasses, this will correct itself. 

 

I'm wondering if we need to see a developmental Optometrist? I mentioned vision therapy to my doctor, who poo-poo'ed the idea. 

 

I'm sure someone already said this in the thread, but yes get him an eval by a developmental optometrist. The glasses might lessen the strain of convergence, but they don't solve the problem.  He probably has more going on, and it's pretty easily correctable.

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Note that sensory issues may also underly developmental vision issues.  When I say sensory issues, I mean issues with the central nervous system that impact things like muscle tone and proprioception and general motor function.  For the eyes to work together properly, motor function is involved.

 

This is where I think that the retained primitive reflexes come in for some kids. My second son had OT before VT, and he scored low on muscle tone (core), proprioception, and lots of motor skill areas (particularly planning). Every single on of those things has improved tenfold since working on retained primitive reflexes in VT (and they really only claim to work on a couple, but they admitted that the ones they work on, like Moro, tend to be the lynchpin to the others falling in line). My son worked and worked and worked on core stuff in OT, but it was like VT made his brain realize that he HAS core muscles and then use them! (I apologize if I already said that in this thread.)

 

I would love to see someone study and tie this stuff together. 

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This is where I think that the retained primitive reflexes come in for some kids. My second son had OT before VT, and he scored low on muscle tone (core), proprioception, and lots of motor skill areas (particularly planning). Every single on of those things has improved tenfold since working on retained primitive reflexes in VT (and they really only claim to work on a couple, but they admitted that the ones they work on, like Moro, tend to be the lynchpin to the others falling in line). My son worked and worked and worked on core stuff in OT, but it was like VT made his brain realize that he HAS core muscles and then use them! (I apologize if I already said that in this thread.)

 

I would love to see someone study and tie this stuff together. 

Me, too.  So much is interrelated but different disciplines are not working together to tweak out the answers and best course of action.

 

Honestly, I would love to have been able to go to one center, where a team of medical professionals, all highly trained in the latest info, could work together and share info and do all the evaluations within a certain time frame, looking at the big picture together instead of all this piecemeal guesswork that we as parents have to do.  We don't have the big fancy titles or degrees (well, many of us don't) but honestly we frequently end up knowing more than the docs.  It just takes soooooo long to get answers.

Edited by OneStepAtATime
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Me, too.  So much is interrelated but different disciplines are not working together to tweak out the answers and best course of action.

 

Honestly, I would love to have been able to go to one center, where a team of medical professionals, all highly trained in the latest info, could work together and share info and do all the evaluations within a certain time frame, looking at the big picture together instead of all this piecemeal guesswork that we as parents have to do.  We don't have the big fancy titles or degrees (well, many of us don't) but honestly we frequently end up knowing more than the docs.  It just takes soooooo long to get answers.

 

This is why I get so frustrated when continued ed providers have arbitrary limitations on which professions can participate in their training. I understand that the different professions each have their own scopes of practice. I'm going to school to (hopefully) become a Speech & Language Pathologist, not an OT, audiologist, psychologist, developmental optometrist, etc. But what harm does it do to allow me to learn about the various conditions and therapies that might be helpful? For example, USC offers a certificate in Sensory Integration but only 1 of the 4 courses is open to non-OT's. What is particularly annoying is that their full-semester in-person version of the training IS open to SLP's. But unless I happen to go to grad school in SoCal (unlikely), I'd need the hybrid online & 3-4 days on-campus version that is restricted to OT's. :thumbdown:

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This is why I get so frustrated when continued ed providers have arbitrary limitations on which professions can participate in their training. I understand that the different professions each have their own scopes of practice. I'm going to school to (hopefully) become a Speech & Language Pathologist, not an OT, audiologist, psychologist, developmental optometrist, etc. But what harm does it do to allow me to learn about the various conditions and therapies that might be helpful? For example, USC offers a certificate in Sensory Integration but only 1 of the 4 courses is open to non-OT's. What is particularly annoying is that their full-semester in-person version of the training IS open to SLP's. But unless I happen to go to grad school in SoCal (unlikely), I'd need the hybrid online & 3-4 days on-campus version that is restricted to OT's. :thumbdown:

 

That's crazy. Scope of practice is for safety and well-being purposes, not to limit the perspective of the provider. Even a couple of semesters of survey courses that help x practitioner learn about y and z fields where things overlap would be invaluable. I think the medical/therapy field needs clear specs for what you are qualified to do for ethical, legal, and practical reasons, but also a clear understanding of where their practice intersects with other disciplines. So frustrating.

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  • 2 months later...

Thought I would update.  We hope to start VT for DS in a few weeks.  I will wait to try VT for me until next year or the year after...or possibly not at all if glasses continue to keep me functional.  Too expensive for now.  I did get my new glasses (today!) and wow, the COVD doc was right.  I CAN see better.  The ghosting is not nearly so bad and the images are much clearer.  I can even read small print, despite the ghosting.  I LOVE MY NEW GLASSES.

 

I just really hope VT helps DS since glasses will not assist him at all.

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This is totally off-topic, but I ordered new glasses yesterday.  (Apparently, in my old age, I've gone from -3.75 all the way down to -2.50 in my left eye over the past few years, which should help with the near prescription on the other end LOL.  I have trial multifocal contacts that are so much better for reading though i'll probably still prefer glasses.)  Anyway, if you need a chuckle, once again I was frame shopping for weeks because my face is too small.  I sort-of liked some at the optometrist office but... $350 just for the frames, no way.  I ended up finding some at Costco where the progressive lens prices are better anyway.  The brand?  My Little Pony.  I hope it isn't a mistake but they were only $49.99.

 

I had to take them to the lady at the desk and ask if they were tall enough for progressive lenses  :o

Edited by wapiti
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Oh Wapiti, that's hilarious!  I'm the opposite direction, with a wide nose bridge, etc.  I can hardly even find glasses my size in stores.  I order online from Zenni now, because even though the glasses themselves leave a LOT to be desired (a LOT), I can put in my specs and crank out something that fits.  

 

But My Little Pony, those could be cute!  :D

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I usually have a terrible time finding frames that fit. I'm just weird all over. Oddly the very first frames I tried at Costco worked beautifully. That has never ever happened on all these decades of wearing glasses.

 

Glad the My Little Pony glasses worked out well wapiti! That's so funny! :)

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So I missed this thread the first time around...Can I ask a question?

 

Is it possible that a girl who basically taught herself to sound out words before 3, and can read small print fluently but fatigues easily--and can have a hard time with longer words when they're not words she recognizes immediately (she read the word "debatable" as "delectable" today)--might have developmental vision issues? Or is this age appropriate? She doesn't actually complain of fatigue, but gets upset if I ask her to read more than a page at a time.

 

She also has messy handwriting, gross motor issues (mild DCD) and low core strength, but other than handwriting her fine motor skills in general are good.

 

(I guess my question isn't whether it's possible, because of course it is, but whether there's a decent chance of it, or whether the fact she read early and fluently means it's probably not an issue. I'd just bite the bullet and set up an appointment, but there's no one in our area that takes insurance, and I can't even stomach the thought of how much the appointment, not to mention any therapy, might cost.)

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So I missed this thread the first time around...Can I ask a question?

 

Is it possible that a girl who basically taught herself to sound out words before 3, and can read small print fluently but fatigues easily--and can have a hard time with longer words when they're not words she recognizes immediately (she read the word "debatable" as "delectable" today)--might have developmental vision issues? Or is this age appropriate? She doesn't actually complain of fatigue, but gets upset if I ask her to read more than a page at a time.

 

She also has messy handwriting, gross motor issues (mild DCD) and low core strength, but other than handwriting her fine motor skills in general are good.

 

(I guess my question isn't whether it's possible, because of course it is, but whether there's a decent chance of it, or whether the fact she read early and fluently means it's probably not an issue. I'd just bite the bullet and set up an appointment, but there's no one in our area that takes insurance, and I can't even stomach the thought of how much the appointment, not to mention any therapy, might cost.)

 

Yes, that's my younger DS. (Except he didn't read that early, and his fine motor skills have always been somewhat sketchy.) The retained reflexes behind some of it also caused serious "ants in the pants" for my son that's gotten much better now.

 

It is also possible that you have retained reflexes that affect things like the writing and the reading, but not so much treatable, identifiable eye issues--I'm not sure at what point you go from being fatigued at reading because your body is spazzing out to fatigued at reading because your body is spazzing out, and the spazzing part is causing a disconnect between eyes and brain. For instance, my son had a retained reflex that caused his eyes and hands to go together instead of differentiating (ATNR or STNR or both--can't quite remember), and it wreaked havoc with handwriting and copying because he was always losing his place. I suspect it messed with tracking, though he always seemed like he tracked fine. It got better with VT, and some of the exercises for VT are exercises that are also done for those reflexes even though VT was really stressing work on a different reflex (the COVD suspects that the reflex she works on has a cascade influence on others). Anyway, I think it's not easily sorted out because professionals don't necessarily overlap in their educational circles on this issue.

 

The not being able to copy from anywhere (not from a board, a book, another line on the page, from the side, from top to bottom, etc.) without serious frustration and total meltdowns is what got the COVD to give a closer look. Prior to that, she was watching him and checking, but he did okay on the vision exams (within reason for a kid with terrible acuity and essentially two lazy eyes). She had to fatigue him a bit, and then he totally lost visual control. After looking deeper and having the actual therapy, she said she was shocked he learned to read. (My older son also compensated very well until he was about ten, and he had very distinct and easily reproduced convergence issues and strabismus!)

 

Different COVDs do things different ways. The exam might not be that much. Call. :-)

 

***Spaz is such a scientific word, I know. Sorry for not having something better come to mind this time of day.

Edited by kbutton
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Spaz is perfectly descriptive, I can't think of a better way to describe it. :)

 

It's always been so fascinating to me that your COVD also tests for and treats retained reflexes. I wonder how common that is? The doctors I looked up don't mention anything about reflexes, so I assume they don't check them.

 

When I look on the websites, the doctors have checklists with possible signs a child might be suffering from a vision issue, and none of them apply...I went to the same sites awhile ago after reading your story, and remember looking at the checklists and deciding it would likely be a waste of money. And if I wasn't a part of LC, the idea never would have crossed my mind. But I guess I probably should bite the bullet...If I don't I'm always going to wonder.

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Wow Onestep, I don't know what they did, but I'm excited for you with those new glasses!!

 

:party:  :party:

The doc did a LOT of very detailed tweaking to the prescription.  Because the exam was soooo thorough, and she had a lot more tech at her disposal, it took a lot of the guesswork and communication errors out of the picture.  Vastly different experience from a normal optometrist.

 

Usually I try describing what I am seeing, the optometrist doesn't really get what I am saying, he/she asks which lens looks better over and over and over with tons of different lenses, I can't give him/her a definitive answer because none look great, I guess at a middle ground and I get glasses that sort of help but still leave a lot to be desired.  Frustrating for the doc and for me.  

 

This time so much more was done that did not rely on my ability to explain myself or their ability to interpret what I was trying to say and I was also talking to eye doctors that actually understood what I was talking about when I did need to give feedback.  They got me.  And knew where to go next.  Whole different ball game.  I will never have normal eyesight again.  I have accepted that.  But to be able to see at least this well is wonderful.  (Well, except now I can see the dirt/grime I was missing before so I am doing a LOT of cleaning :) ).  The kaleidoscope effect is almost gone.  Just some minor ghosting and stuff. 

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Spaz is perfectly descriptive, I can't think of a better way to describe it. :)

 

It's always been so fascinating to me that your COVD also tests for and treats retained reflexes. I wonder how common that is? The doctors I looked up don't mention anything about reflexes, so I assume they don't check them.

 

When I look on the websites, the doctors have checklists with possible signs a child might be suffering from a vision issue, and none of them apply...I went to the same sites awhile ago after reading your story, and remember looking at the checklists and deciding it would likely be a waste of money. And if I wasn't a part of LC, the idea never would have crossed my mind. But I guess I probably should bite the bullet...If I don't I'm always going to wonder.

Maybe there is someone qualified that can just to a screening, not a full eval, just to see.  If it comes out negative but you still have doubts see how things go this year then maybe seek a more detailed screening the following year.

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I would be hesitant to say they identify and treat retained reflexes because they would too. The do check reflexes if the child has signs of ocular motor issues, but it's mostly Moro they check. The exercises they do to integrate it will depend on the child and the severity of the Moro reflex. When I looked up what they did for my son, it hit tons of the retained reflex exercises across the board in a tightly controlled progression. So, they do, but they don't check all kids for all reflexes as part of the screening. It's more of a "we see a problem, so let's check this too."

 

I should try to find out if the exercises have some special proprietary thing about them. If not, maybe I can send you a copy. (Our COVD is leaving her practice! Long story that I heard secondhand, but she's moving, I think, and then maybe staying home with kids for a while? She might not care if I copy them in that case.) 

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The doc did a LOT of very detailed tweaking to the prescription.  Because the exam was soooo thorough, and she had a lot more tech at her disposal, it took a lot of the guesswork and communication errors out of the picture.  Vastly different experience from a normal optometrist.

 

Usually I try describing what I am seeing, the optometrist doesn't really get what I am saying, he/she asks which lens looks better over and over and over with tons of different lenses, I can't give him/her a definitive answer because none look great, I guess at a middle ground and I get glasses that sort of help but still leave a lot to be desired.  Frustrating for the doc and for me.  

 

This time so much more was done that did not rely on my ability to explain myself or their ability to interpret what I was trying to say and I was also talking to eye doctors that actually understood what I was talking about when I did need to give feedback.  They got me.  And knew where to go next.  Whole different ball game.  I will never have normal eyesight again.  I have accepted that.  But to be able to see at least this well is wonderful.  (Well, except now I can see the dirt/grime I was missing before so I am doing a LOT of cleaning :) ).  The kaleidoscope effect is almost gone.  Just some minor ghosting and stuff. 

This update makes me so happy.  I'm thrilled for you!

 

Spaz is perfectly descriptive, I can't think of a better way to describe it. :)

 

It's always been so fascinating to me that your COVD also tests for and treats retained reflexes. I wonder how common that is? The doctors I looked up don't mention anything about reflexes, so I assume they don't check them.

 

When I look on the websites, the doctors have checklists with possible signs a child might be suffering from a vision issue, and none of them apply...I went to the same sites awhile ago after reading your story, and remember looking at the checklists and deciding it would likely be a waste of money. And if I wasn't a part of LC, the idea never would have crossed my mind. But I guess I probably should bite the bullet...If I don't I'm always going to wonder.

I think you should call and ask about what the testing entails and how much it would cost.  Then decide.

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I would be hesitant to say they identify and treat retained reflexes because they would too. The do check reflexes if the child has signs of ocular motor issues, but it's mostly Moro they check. The exercises they do to integrate it will depend on the child and the severity of the Moro reflex. When I looked up what they did for my son, it hit tons of the retained reflex exercises across the board in a tightly controlled progression. So, they do, but they don't check all kids for all reflexes as part of the screening. It's more of a "we see a problem, so let's check this too."

 

I should try to find out if the exercises have some special proprietary thing about them. If not, maybe I can send you a copy. (Our COVD is leaving her practice! Long story that I heard secondhand, but she's moving, I think, and then maybe staying home with kids for a while? She might not care if I copy them in that case.) 

 

That's so sweet of you to offer, thank you. I've checked Anna using the retained reflex website people have linked here, and she didn't show anything obvious, but could the reflexes be so subtle that only a trained professional would be able to tell? It all sounds so woo woo to me, but also fascinating. I actually wonder if I have retained reflexes myself, I was born breech, I W-sat for a couple of years, and I'm a complete klutz, lol.

 

When Anna was 18 months, I took her to a neurologist because she wasn't walking yet, and her birth mother carries a gene for Spinal Muscular Atrophy. The neurologist found one reflex that hadn't developed appropriately...I don't think it was one of the retained reflexes, he didn't do the checks I've seen online, it was more the hammer type reflex check. And he didn't seem concerned, but because of that I've wondered if there's something else we may have missed.)

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That's so sweet of you to offer, thank you. I've checked Anna using the retained reflex website people have linked here, and she didn't show anything obvious, but could the reflexes be so subtle that only a trained professional would be able to tell? It all sounds so woo woo to me, but also fascinating. I actually wonder if I have retained reflexes myself, I was born breech, I W-sat for a couple of years, and I'm a complete klutz, lol.

 

When Anna was 18 months, I took her to a neurologist because she wasn't walking yet, and her birth mother carries a gene for Spinal Muscular Atrophy. The neurologist found one reflex that hadn't developed appropriately...I don't think it was one of the retained reflexes, he didn't do the checks I've seen online, it was more the hammer type reflex check. And he didn't seem concerned, but because of that I've wondered if there's something else we may have missed.)

I'm a klutz, too.  :)

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That's so sweet of you to offer, thank you. I've checked Anna using the retained reflex website people have linked here, and she didn't show anything obvious, but could the reflexes be so subtle that only a trained professional would be able to tell? It all sounds so woo woo to me, but also fascinating. I actually wonder if I have retained reflexes myself, I was born breech, I W-sat for a couple of years, and I'm a complete klutz, lol.

 

When Anna was 18 months, I took her to a neurologist because she wasn't walking yet, and her birth mother carries a gene for Spinal Muscular Atrophy. The neurologist found one reflex that hadn't developed appropriately...I don't think it was one of the retained reflexes, he didn't do the checks I've seen online, it was more the hammer type reflex check. And he didn't seem concerned, but because of that I've wondered if there's something else we may have missed.)

 

I know that different people who checked my son saw different things, but there was some overlap. The school OT/PT checked and didn't find Moro, but when the COVD checked, it was glaring, even to me. I assume there is more than one way to look at it.

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  • 1 month later...

Thought I would bump the thread and give an update.  DD was having some issues with what might be vision related stuff and she needed to have her eyes checked, anyway since her glasses prescription is old.  We went out of town for her neurospych eval so while we were there we had her go through the Developmental exam that DS and I went through with the same team.

 

Results came back today.  There was good news and bad news.  Good news, her depth perception is perfect.  Her color vision and pupil response are perfect.  Eyes look healthy (although she has some allergy signs).  Bad news, Eye teaming/Eye Focusing/Eye Tracking issues.  And her eyes fatigue severely within 15 minutes, with focus, teaming, tracking all getting worse and worse after that first 15 minutes.  And her eyes don't recover unless she rests for at least 5-10 minutes.  I knew this intuitively since she starts to fade out when we are doing academics within 15-20 minutes of starting.  We can usually stretch things to 30 minutes but then she has to have a break.  After a break she is usually o.k. again for another 15-20 minutes then starts to get grumpy, have trouble staying on task, misread, or miswrite, etc.  I just didn't tie it to vision.  I tied it to the dyslexia and her need for movement (she usually goes out to swing).  Reading speed is slow, but decoding and fluency are good.  The eye exam confirmed this.  

 

So VT for DD, too.  At least there is a good chance that VT will help her.  She is enthusiastic, which also helps.  We just have to find a way to get it done effectively while being 4 hours away from the COVD doc.

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Although it feels overwhelming, this is good! You have a coherent explanation and these are things VT is AWESOME for.

 

Is she low tone? After my dd's VT, we eventually went to bifocal contacts.

 

It will be good to hear her progress! I'll bet a few months even could make a big difference.

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Although it feels overwhelming, this is good! You have a coherent explanation and these are things VT is AWESOME for.

 

Is she low tone? After my dd's VT, we eventually went to bifocal contacts.

 

It will be good to hear her progress! I'll bet a few months even could make a big difference.

I talked it over with the kids and told them we would probably scale back some on academics and really focus on VT, mental and physical health, etc. for the fall.  The doc says that we could Skype some and do stuff at home each week, too, so we would only be driving there twice a month.  If my vehicle cops out on me that may add some stress but there are NO options locally.  Keeping my fingers crossed that this is worth it.

 

Best wishes to all.

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The doc did a LOT of very detailed tweaking to the prescription.  Because the exam was soooo thorough, and she had a lot more tech at her disposal, it took a lot of the guesswork and communication errors out of the picture.  Vastly different experience from a normal optometrist.

 

Usually I try describing what I am seeing, the optometrist doesn't really get what I am saying, he/she asks which lens looks better over and over and over with tons of different lenses, I can't give him/her a definitive answer because none look great, I guess at a middle ground and I get glasses that sort of help but still leave a lot to be desired.  Frustrating for the doc and for me.  

 

This time so much more was done that did not rely on my ability to explain myself or their ability to interpret what I was trying to say and I was also talking to eye doctors that actually understood what I was talking about when I did need to give feedback.  They got me.  And knew where to go next.  Whole different ball game.  I will never have normal eyesight again.  I have accepted that.  But to be able to see at least this well is wonderful.  (Well, except now I can see the dirt/grime I was missing before so I am doing a LOT of cleaning :) ).  The kaleidoscope effect is almost gone.  Just some minor ghosting and stuff. 

 

This has been me for the last decade or so. When I was a kid the ophthalmologist told me that due to the muscles in my eyes, I should be able to look different directions at the same time. At the time, I thought it sounded cool. I wonder, though, if that issue is starting to manifest itself in my vision. I can see clearly when I'm only using one eye, but put them together and the blurriness increases.  The ophthalmologist decades ago just said I needed prisms. I can see better with the prisms than without, but I too have ghosting. (Thank you for the terminology. I couldn't explain it in a way the ophthalmologist would understand. )

 

I would never have thought a nearly 50 yo might benefit from VT. I just had an exam, but I'll see if my insurance will cover any of the COVD doctors next year. Thank you for talking about your experience in regards to you, not just your kids.

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