VT sticker shock and questions

[sangtarah]

We had an appointment yesterday to go over Vision test results.

 

Besides tracking and over-convergence, her field of view is narrowed, and she hasn’t much ability to visualize/manipulate objects in her head.

 

Treatment includes photo-therapy - a light box she uses for 20 min, 3-4times a week, for a month. And group treatment sessions at the center, 2-3 times a week for 8-10 months.

 

Photo-therapy is $370

8 group sessions is $500 ($65 each, have to buy 8 at a time).

 

There wasn’t any mention of home work besides the photo-therapy.

 

Does this sound consistent with other experiences?

Is it usual for sessions to be a group, and for there to not be homework?

[EKS]

None of that sounds like our experience.  I think the phototherapy may be a new thing that wasn't available when we did VT, so I won't comment on that.  But a group VT experience sounds ridiculous and no homework is even more ridiculous.  My kids' VT sessions were one on one and very intense.  And the homework is required to cement everything, though maybe they think that going more than once a week is doing that.

 

I would much rather have a single one on one session each week and 30 minutes of daily homework.

[OneStepAtATime]

None of that sounds like our experience.  I think the phototherapy may be a new thing that wasn't available when we did VT, so I won't comment on that.  But a group VT experience sounds ridiculous and no homework is even more ridiculous.  My kids' VT sessions were one on one and very intense.  And the homework is required to cement everything, though maybe they think that going more than once a week is doing that.

 

I would much rather have a single one on one session each week and 30 minutes of daily homework.

:iagree:   What EKS said...all of it.

[PeterPan]

I would call them back or email and make sure you're understanding things correctly before you conclude. For instance, the place we did VT had one large room for all the therapy, and they intentionally WANTED it that way so there would be stuff happening, distractions. They want the kids to be able to process and use their vision with real life going on! So the therapy was one-on-one, but it was in a group setting or something someone might describe as a group. So you could clarify exactly what's happening, kwim? I agree that seems odd to do intensive work without that one-on-one. I don't see that as being effective and for that price it ought to be one-on-one. Maybe they have a way they're making it work Is the $65 session an hour? They could be doing one-on-one for part of it and on computer for another part and rotating, allowing them to do an hour of therapy but bill at a lower rate. Our place was that price for a 1/2 hour. So if they're doing an hour and rotating somehow to get up therapy and keep down cost, it could be reasonable. You just need to clarify what is going on.

 

I've heard of VT docs who are totally legit and good who live in an area where doing all the therapy in-office is the norm. It was a more affluent area, frankly. Also, some people have issues with compliance and find their kids accomplish more in-office than they do at home. It really depends on the dc and the dynamic. 

 

It's always good to call around. Now you know what the diagnoses are and the issues are, but you're totally free to shop around and find a set-up that works for you. I'm a little confused what the photo therapy is for. That I thought was for sleep disorders. I didn't know it was used for VT. Maybe it's not at all the same thing. Did they show it to you or explain? 

 

I don't think what you're describing is definitely bad or deal breaker. It could be really good. Just depends on the details. Homework would be normal, but again just ask.

[melbotoast]

We are paying $185 for an hour 1-on-1 visit every other week. They recommended weekly at first but said we could do every other week if we were diligent about homework. Homework is 20-30 minutes 3x a week. They will retest for progress every couple months, estimated 10 months overall.

 

I haven't heard anything about the light box stuff.

[PeterPan]

I'm googling light boxes for VT, and apparently it's used for types of visual impairment. You really want to contact the doctor and get the specific terms, so you can know why this is being suggested and google if for yourself. You're saying "her field of view is narrowed" but that seems like such a vague, general understanding. It may be that with the correct terms/diagnosis the suggested treatment actually makes sense.

 

Also, I don't recall that we did therapy at home on the days we went to the office. So if you add up the days in-office and the days at home, you get to working 6-7 days a week, which makes sense.

 

I would definitely take some time to clarify what the diagnoses are and why these things are being recommended. You can't get a 2nd opinion on ways to treat it when you don't have all the diagnoses. Is the doc going to write a report? That report would be something you could take elsewhere for a 2nd opinion. 

 

Remember, the most *common* use for VT is convergence insufficiency. So you're saying something a little more complex, a little less common, and I wouldn't just assume the doctor is wrong till you get complete information and can know that you're comparing treatments for the same problems. 

Edited December 12, 2017 by PeterPan

[Guest]

Thank you all.

 

Unfortunately the folder that the doctor provided with more detailed information is in dh’s car. I’ll have to dive into that more when he gets home.

 

Also unfortunate that we went ahead and set up dd’s first visit for tomorrow, so I won’t have much time to ask follow-up questions before she is expected to be there.

The first visit is not a group thing. There are only 2-3 kids at the same time in a group session. I imagined it to be a “group†doing individual things, just at different stations. That’s one of the questions I will ask.

 

The photo-therapy is a light box that she is to look at. We were told it would change the field of what her brain can see when she is focusing. Trying to focus on something is what narrows her field of view, he said. We rent the unit for a month and she uses it multiple times per week.

[prairiewindmomma]

If it's a standard 10,000 lux photo box, they run $90-150 on amazon.

 

We paid $142/hr(?)--it was just under $150/hr-- for 1:1 vision therapy.  It *was* helpful, but we were dealing with a separate set of issues (convergence insufficiency resulting in double vision, etc.)

[Guest]

Extra information: The group sessions are 30 minutes. It’s 1, 2, or 3 children at a time, depending on who signs up for that slot. Each child works on his/her own therapy during that time.

 

ETA: I won’t know if they want her doing homework until her first visit, when they give us the detailed treatment plan.

Edited December 12, 2017 by sangtarah

[exercise_guru]

There are only two places in our area that do VT therapy. I would very much appreciate hearing about the homework other people were assigned. Here they basically wanted me to pay 4800 dollars for 48 sessions. I refused and paid for 12 sessions at a time for 100 dollars each. We did a total of 18 session because that is what my insurance did cover. 

 

They didn't let me observe and they did not assign homework. I still feel a bit burned about it and would have liked to do homework at home with my son. Especially on tracking exercises. 

 

I hope they will let you observe what is being done and give you homework. Please if anyone has materials or work that they recommended I would appreciate the link.  My son had convergence issues. I will have to look it up. The good news is that even 18 sessions one each week improved his situation significantly. 

 

Edited December 12, 2017 by exercise_guru

[PeterPan]

Thank you all.

 

Unfortunately the folder that the doctor provided with more detailed information is in dh’s car. I’ll have to dive into that more when he gets home.

 

Also unfortunate that we went ahead and set up dd’s first visit for tomorrow, so I won’t have much time to ask follow-up questions before she is expected to be there.

The first visit is not a group thing. There are only 2-3 kids at the same time in a group session. I imagined it to be a “group†doing individual things, just at different stations. That’s one of the questions I will ask.

 

The photo-therapy is a light box that she is to look at. We were told it would change the field of what her brain can see when she is focusing. Trying to focus on something is what narrows her field of view, he said. We rent the unit for a month and she uses it multiple times per week.

 

Just from googling, I don't think the "light box" they're using is going to be the same at all as what people use for light therapy for sleep disorders, etc. It's not the same. I mean, they're both bulbs, but they're not the same design or implementation.

 

Really, it seems like this doc has a plan. He must have had something that seems sensible, since you went ahead and signed up. I would suggest beginning very conservatively, asking a LOT OF QUESTIONS, and not paying for more than one month at a time. That way you stay satisfied. 

 

Did they check her for retained reflexes? 

 

Is your budget constrained so that you need other options? If it is, but upfront and just say hey, I can't afford this in the way you're saying, what can we make happen if she only comes in once a week and does more homework? Just ask questions and talk with them, kwim? 

 

If you didn't use them, do you have another therapy place within a reasonable drive (2-3 hours max, ugh) that you could use?

 

My brief googlefu makes it look like the light box might actually be a reasonable way of approaching what it sounds like he's finding in your dd. I wouldn't assume it's bad just because someone else here didn't do it. Ask what the alternatives would be if you *didn't* have the money to afford that. Just ask questions, kwim? 

 

If you keep a tight leash on what you're paying, ask a lot of questions, stop paying when you're not happy, you should be ok. But make sure they tested for retained reflexes.

[PeterPan]

Extra information: The group sessions are 30 minutes. It’s 1, 2, or 3 children at a time, depending on who signs up for that slot. Each child works on his/her own therapy during that time.

 

ETA: I won’t know if they want her doing homework until her first visit, when they give us the detailed treatment plan.

 

Keep us posted on how it goes! I'm guessing if you schedule during the day you're likely to have less kids there. 

[Guest]

PeterPan, they did not test for retained reflexes. Is there a way I can do that at home?

 

I am reading the information given to us, and thought I would share in an effort to gain more insight. 

So, the folder says:

• convergence excess
• binocular vision dysfunction - suppresses either right/left eye
• focusing - able to clear flippers 5 times in 1 minute (average is 20 times per minute)
• struggles with pursuits and saccadic eye movements
• beery developmental test of visual motor integration (vmi) (score of 6 years, 2 months)
• visual memory - 16th%
• visual discrimination - 95th%
• spatial relationship - 98th%
• form constantly - 16th%
• sequential memory - 16th%
• visual figure ground - 18th%
• visual closure - 9th%
• wachs block test - 8th%
• constricted visual field

In-office therapy: 8 times per month, sessions 30-35 min long, estimate needing between 64-88 visits

home therapy: phototherapy to treat constricted visual field

[PeterPan]

Pyramid of Potential has a list of the reflexes. You can find tests for them on youtube. Others here have been successful at it. I'm bunk at testing them, so don't ask me, lol. 

 

They're going to charge you a cancelation fee (unless it snows or your kid is sick), so we assume you're going tomorrow. I think their treatment plan is probably fine. Seriously there *are* VT docs who do it this way. Do they have a good reputation with people you know who've gone there or online? And can you afford it? As long as you can afford it, there's nothing there, to me, screaming no don't do this. But really, convergence is so fast, in general, to snap into place. Like it can really be one month and you're seeing progress. That longer estimate is because you're talking EVERYTHING. But you should be seeing SOMETHING in a month, a little something, so you know you're on the right track. That's why you shouldn't pay way ahead.

 

If the business model bugs you, don't do it. If you can't afford it, ask questions till they give you a plan you can afford. It's pretty obvious their business model is to do most of the therapy in-office. Given the pain in the butt kids can be with compliance, it actually makes sense. Not financial for the parents, but just sense. 

 

The gig with retained neonatal/primitive reflexes is that they are the bottom piece, the foundation, that you need integrated and out of the way in order for all the other things to happen developmentally. So, to me, that's actually a bigger deal, when they're looking at the end product and not caring about the neurological foundation to let these more advanced skills develop. IF she has retained reflexes, it usually just takes a month or two of diligent effort to get progress on them. Some docs will work on reflexes and vision concurrently. Some don't. But just my hindsite is that's something to be really cautious about, if they're going forward without testing them. Our place did that, and what happened was that dd made progress but it was HARD. So do the sane thing and get the reflexes integrated, kwim? If they aren't and your kid is balking at that therapy, that will probably be why. 

 

Don't be worried about tomorrow. Just go in, ask questions, see what it's gonna be. If you don't like what you're seeing, don't pay ahead, kwim? As long as you control the $$, you're able to stop when you're not happy. If you don't like what you see or aren't confident, pay for just that session and wait to schedule more till you sort things out. It will be fine, no matter what. If you wait, it's fine. If you like their answers and can afford it, you're fine.

[MistyMountain]

Light therapy is called syntonics and it is accepted practice in vision therapy nowadays at least. They talk about it a lot on a page for vision therapy. The purpose if it is to open up constricted visual fields which you do along with other things to expand side vision.

Edited December 13, 2017 by MistyMountain

[exercise_guru]

I second the retained reflexes I would only test one a day though as it gets overwhelming . My kid wiggled so I had to do them separately to make sure. My son had some of the  similar stats on testings. He made tremendous improvements. Do what you can afford and make sure the therapist is qualified. My son now has tested out of VT. There are a few things you can do at home to help build up the vision system in addition to VT. the best one is to put a sticker on the window at vision height. Have him focus on the sticker and then focus at an object across the yard. Do this 10 times ( not fast let his eyes focus each time) a couple of times a day. With vision therapy it helps cement the eyes and their ability to quickly refocus from close to small objects. I used a book because my VT people were secretive and wouldn't give me any exercises for home.  but the material wasn't novel once I looked at it I could have made up things at home and used if I had known what I was doing.  I used materials for visual tracking. The VT therapist worked on 3D focusing as I didn't feel confident with supplementing that. 

 

I used scanning activities like where is waldo type books and  Developing Ocular Motor and Visual Perceptual Skills: An Activity Workbook 1st Editionby Kenneth Lane OD FCOVD (Author)

 

I am still working on getting him more visual motor practice. 

For other areas to boost visual motor any activity that involves concentrating with your eyes like legos,puzzles, crosswords, tracing on a tracing board. shooting basketball, archery, paddle games, pegboards, putting pins in styrophome pattern, lightbright games, perler beeds. Anything that is very good at working the hand eye coordination helps. My son struggled at most of these activities and handwriting before VT. Now things have improved significantly. He will do many of these things now and enjoys them. Not totally but improved. Also after VT we revisited handwriting OT and it was miles better than before. Reading error free also improved and fatigue with schoolwork improved. 

Edited December 13, 2017 by exercise_guru

[Guest]

So most of her exercises are on a computer screen, I think. They have three stations, so up to three kids can work at a time. We are trying 8 sessions and will see how it goes.

 

There are no exercises to do at home.

 

ETA: spelling 🙄

Edited December 13, 2017 by sangtarah

[PeterPan]

I had issues with peripheral vision (sorta like a narrowed field, I guess you could say), and I found it kind of frustrating that the VT exercises at that time were limited to paper. I really like what I'm seeing of the light box for that. It would have been way better than the strict paper exercises I had.

 

Well I'm glad you were satisfied with how it went! Yes, that makes sense that they set up stations. Where we went, they alternated between paper/hands-on and computer work. There's just stuff that is actually better on the computer. If the computer is the ONLY thing they do, that would be odd. But to have it be part or a focus for a while, sure, reasonable. Were they using lenses or flippers while they were working on the computer? Will there be other things besides computer? It's questions you can ask. 

 

No homework?? You might go ahead, during this month, and call around and see what your other options are. That way you have some basis for comparison. Really, therapy like that is best done intensively and consistently. Doing it every day or almost every day is ideal. It doesn't make sense for there to be NO homework. I would ask why there's no homework and whether it will change. They may have a really reasonable answer, like starting off slowly so the kid doesn't get overwhelmed. There could be an explanation.

[MerryAtHope]

I can't urge enough that you test for and work on any retained reflexes. Everything I read about VT before we went into it indicated how necessary it was (and later failures for VT often seemed to be related to not first working on reflexes). My son's dr. said it wasn't even worth doing VT without first working on them--and while they did include some vision exercises in the process, my son made almost no progress at all until we had cleared all the reflexes (which in his case took a long time)--and he made fast progress after that point. No relapses. 

 

Is this dr. on the COVD list? (It seems like they did a good amount of testing--I just thought all COVD docs worked on reflexes. Maybe not?) I'm a little surprised at all the computer work as well--will there be exercises not involving the computer? (We did relatively little computer work comparatively, though there was some.)

 

DS's sessions were 1 on 1 with daily homework. 

[Guest]

He is in the COVD list.

 

Follow-up question: how do you measure progress?

I’d like to think that we could see the progress she is supposed to make without waiting for the dr to test her (another big cost).

[PeterPan]

They will measure with tools, but we saw carryover to life within 1-2 months.

[MerryAtHope]

He is in the COVD list.

 

Follow-up question: how do you measure progress?

I’d like to think that we could see the progress she is supposed to make without waiting for the dr to test her (another big cost).

 

It's always interesting to me how much these costs can vary! The testing was only about $50 more than a regular therapy session here (and the tests were the one thing our insurance actually covered). I wish it all wasn't so expensive!

 

We saw no improvement for about 9 months while my son was working through primitive reflex exercises along with some vision exercises. (We went once a month and did daily exercise at home. DS was 12 when we started, and had 3 diagnoses. About 5-6 months in, I did call the office in tears one day because we were both so frustrated at the difficulties he was having and the lack of progress.) But when he had completed all of the reflex exercises, we saw huge changes starting the next month and all fall until he was finished. Reading was faster and easier. He asked if he could drop the audio book for science because he could now read faster than the audio. His accuracy improved, and his overall frustration with school decreased pretty dramatically. By the time we retested, it felt more like a formality, or something to simply confirm that we had indeed met all of the goals. We did do a recheck a year later though, just to confirm that there weren't any issues or regression (sometimes other difficulties can make it hard to tease out what might be vision, what might be something else, etc....)