VT formal results in - I am underwhelmed...

[mom22kids]

Anyone want to help me determine if this kid really needs VT??

 

I had the formal results meeting on Monday and I will admit that it sort of brought me back on board.  I went in to the meeting with my back up and sort of with a "sell me on this" attitude and they kinda did.  First they went over the results - and I can see now that they minimized the good and played up the bad.  But she had the only written copy during the meeting so all info in that hour was from her mouth.  She also answered ALL my questions really well.  Said everything I needed to hear and made me actually start to consider this as a viable option that might work. 

 

Having said that...there was one GLARING moment when she completely contradicted herself about the retained reflexes.  She said that my OT is correct that you can NEVER truly retain the reflexes and that she is glad my OT has made me aware because it gives me a more realistic expectation.  That in fact they don't want them to completely go away they want you to have a Moro reflex - just in regards to a wolf not a word.  Then seconds later she said they have 100% success rate in retaining primitive reflexes??

 

Another thing - they told me I would need the 38 week program (there is 24 & 42 also).  I point blank said - I think we both know that I will not accomplish all this in 38 weeks.  Am I right??   They both sort of shrugged in agreement.  I said - Realistically I am looking at 60 weeks.  I have been in this gig long enough to know about regressions and all of that and that at 60 weeks you will "graduate" her but that I could be months on the hamster wheel of Vision therapy where she keep sliding at every check up and we need to redo some stuff to prevent that slide.  They agreed.  All therapy that occurs after "graduating" is free.  Its essentially an eye test again and they send you home with homework to correct.  When I asked if any "in house" corrections needed to be done were free there was some grey area and the promise to send me an email promising this type of maintenance would be free also.

 

All I committed to in that meeting was to purchase "anti-fatigue" lenses with a +0.50 prescription.  This was an idea broached by me and they agreed they would help her *a lot* in school given her visual issue.  Essentially a bifocal to help with board to desk work.  

 

So then I got home and read the formal results and I was shocked by how NOT bad they were. But maybe I am seeing them through the eyes of someone who deep down doesn't want to do this?  It may take me a minute but I will post a quick synopsis in the next post.

[displace]

I went with DS to three different COVD. I got three opinions agreeing we need VT. All the diagnoses were different though. One said we need 6 -9 months, 2-3 x per week. One said every week or two for a few months. One said every week for a few months. The prices were drastically different too.

 

I think with some VT it's a no brainer (CI). Almost everything else is a risk if it will work. I felt we had improvement noticeably but not full resolution of problems. But is it the eyes or DS? I saw improvement slightly in 2 months and more noticeably by three, then static afterwards. I went with the COVD who was closest and had the least diagnoses. Should we have gone with the most pricey and lengthiest treatment? Idk.

 

Anyway, I recommend seeing other COVD to consult.

[mom22kids]

Edited to remove test results.

 

Edited August 25, 2016 by mermaid'smom

[mom22kids]

I went with DS to three different COVD. I got three opinions agreeing we need VT. All the diagnoses were different though. One said we need 6 -9 months, 2-3 x per week. One said every week or two for a few months. One said every week for a few months. The prices were drastically different too.

 

I think with some VT it's a no brainer (CI). Almost everything else is a risk if it will work. I felt we had improvement noticeably but not full resolution of problems. But is it the eyes or DS? I saw improvement slightly in 2 months and more noticeably by three, then static afterwards. I went with the COVD who was closest and had the least diagnoses. Should we have gone with the most pricey and lengthiest treatment? Idk.

 

Anyway, I recommend seeing other COVD to consult.

 

We have a LOT of eye drs here that have Vision therapy listed as services they offer but they just have a small facility with some cubicles and I suspect the VT is a LOT of paper homework.  Zero interest!  This is the ONLY facility in my city that is a HUGE space with all the trampolines and gadgets and technology.  It would be the only place I would be interested in having the therapy.  As well I have to pay $250 for every assessment.  I just cannot afford multiple opinions.  I wish! :)

[PeterPan]

It must be late, because the only thing I see are some convergence issues.  I mean literally nothing else was low, right?  So do some stuff for convergence or go once a month for therapy (not more) and have them give you lots of homework.

 

Honestly, I'm flabbergasted she had so little wrong.  I must be readig it crazy.

 

Yes, my dd wears bifocal contacts.  But she did that AFTER her VT.  Lenses before VT made the convergese worse.

Edited August 11, 2016 by OhElizabeth

[displace]

That report sounds.... Not bad. I don't know the history. What signs prompted you to take DD to a COVD? Slow reading or pain like headaches or eye strain?

 

ITA about cost of evals. Two of the COVD exams were covered by medical insurance. They were basic, not the full intense eval. They were opinions by the COVD of diagnoses but not objective measurements as such.

[Tiramisu]

Are you dealing with any clumsiness or fine motor difficulties? Messy handwriting?

[mom22kids]

Ok whew!!!  It's not just me! LOL 

 

We took her because she was told she has VPD a year ago.  But just at a routine eye exam - we did not follow up with the $220 assessment.  Our OT originally discovered some issues with her eyes and I wanted a second opinion so I went to this VT place.  They confirmed VPD but we declined the therapy at the time because the OT was cheaper at the time and coming to our home and was doing vision work with her.

 

Our school at the time was happy to accept the diagnosis (without paperwork) and work within her limitations.  Same with her CAPD.  But in Sept she goes to a new school with all new teachers and I needed the paperwork to validate what I was saying.  So this summer we had the VPD and the CAPD formally assessed and now have the written paperwork for both.

[mom22kids]

It must be late, because the only thing I see are some convergence issues.  I mean literally nothing else was low, right?  So do some stuff for convergence or go once a month for therapy (not more) and have them give you lots of homework.

 

Honestly, I'm flabbergasted she had so little wrong.  I must be readig it crazy.

 

Yes, my dd wears bifocal contacts.  But she did that AFTER her VT.  Lenses before VT made the convergese worse.

 

Well the way that they ran the meeting they made it sound a LOT worse!!  It wasn't until I got my hands on the file that I was completely flabbergasted.  I have gone over them many times trying to see something more serious. 

 

[mom22kids]

Are you dealing with any clumsiness or fine motor difficulties? Messy handwriting?

 

Yes. She has balance issues.  But in retrospect it hasn't been AWFUL lately.  We have done a LOT of work with her since her first test.  She doesn't like using cutlery or little beads but she is an avid drawer so she has really worked that fine motor in that way.  Handwriting is hit or miss.  Her notebook looks like 8 kids share it! LOL

[Tiramisu]

I guess the things noted, besides the convergence, are things that are similar to my two DDs who our Covd guy did not recommend VT for (figure-ground, longer fixations...longer fixations are associated with dyslexia by the way but that DD like yours has amazing comprehension scores.)

 

Both have VP issues and one has general coordination issues on top of that.

 

We have a covd guy who is very well-respected among professionals in the field, and he well-loved by local families. But the issues he will offer to address are much narrower than what you often read about here. His time estimates are shorter and he sticks to them, and parents see great results. He is just very conservative and clear about what he can do.

 

I'm just not quite seeing a clearly justifiable reason for a lot of therapy. Maybe just 12 weeks for convergence to see if that reduces stress?

[PeterPan]

I'd see if the OT can work on convergence and skip the eye place entirely. You can go back in 6 months or a year for a recheck.

[PeterPan]

Logic there is your OT has resolved some of the vision issues by improving overall wiring so you keep going with that. Or show what the VT is trying to treat besides OR issues and convergence. Quantity it, kwim?

[Tiramisu]

In addition to what OhE said above regarding OT, Heathermomster has talked about the how progress in VT can be very limited if you do it prior to addressing the coordination piece with OT/PT.

[PeterPan]

Yup, that's what I think you're seeing.  To go from a full diagnosis of VPD to a later set of evals where the ONLY thing clinical was convergence, and the main thing you did was OT?  Obviously OT was addressing the underlying root of the vision dysfunction.  So you keep going with OT.  You don't ask a VT to solve an OT problem if the OT is doing it.  Or you don't pay $$$$$$$ to a VT therapist for unclear goals.  Looking at that list, what were their goals?  You said they scared you with a list, but where's the list?  Can't hit quantified goals.

 

I think it's not reasonable to pay $$$$$$$ for visual processing goals.  I think it's ok to pay some money for actual vision goals, but the only actual vision goal I saw was the convergence.  Find them.  Not visual processing (which you can work on) but actual physical vision goals.  Split the things they're saying they want to work on into columns.

[PeterPan]

Ok, look at the saccadic eye movements scores.  Those aren't cool.  Some convergence, some stress.  I still think I'd ask if your OT could work on this.  Like work on them in the context of the whole person.  

[mom22kids]

Funny enough the saccadic eye movements was what our OT noticed almost 2 years ago.  It was THEM that sent me to the eye Dr to begin with.  We did a LOT of work with them and probably had them in the 80th percentile.  I think we saw MAJOR improvement.  We did a lot of vestibular work and some finger tracking.

 

Once we had it where we wanted it we relaxed on it a bit but would check occasionally.  probably should have been more diligent but some other things reared their head and..well...focus goes to the biggest prob. 

 

Then in June she got Vertigo and ALL Vestibular work had to stop.  We are *just* getting back into it but we are right back at nothing so I am not surprised to see they went to hell in a hand-basket but disappointing to see how much we lost.

 

But yes we can absolutely get those numbers up without VT.  And this type of "loss" is exactly what scares me about paying so much for VT.  Knowing how fragile the success can be.

[geodob]

You began this by asking if she really needed VT?

Though with identifying the Nystagmus, and her sitting tight and leaning forward. While performing the test.

With VT, they could help to remember more precisely, how far to lean forward?

To suit the angle of what she is looking at. From directly in front, as with a computer screen. To reading a page down on a table.

But as she sat tight and leaned forward while doing the test?

Perhaps she has already developed these coping strategies?

In which case, I wonder what other help that the VT could provide?

 

Though it might be helpful to understand Nystagmus and saccadic eye movements?

 

The first important thing about how we see?

Where light is reflected from everything we see in front of us.

That passes through the lens of eyes, like a camera lens.

An image is then formed on the back of our eyes, the retina.

 

But a crucial part of this, is that most of the image formed on our retina?

Is a 'blurred image'.

It is only the very center that is a clear image.

Which is called our eyes Fovea.

 

The size of the Fovea, is only 1.5 mm's, or 0.06th of an inch.

Also within our field of vision, from left to right, of 180 degrees.

The fovea only sees 2 degrees clearly.

So that we only see a tiny area clearly.

 

But to cope with only being able to see such a tiny area clearly?

In a part of our Brain Stem, we have something called our Superior Colliculus?

This is involved with controlling automatic muscle movements, and also where Primitive Reflexes are held.

 

So that one set of automatic muscle movements stored here?

Are the Saccadic movements of the eyes.

 

Coming back to this 'tiny area on the Fovea that we see clearly'?

To form a 'larger clear image'?

Within each second? The eyes make 5 automatic movements, in a pattern around what we are looking at?

That basically move in a pattern of: 'left-right-above-below-middle'.

A snapshot is taken after each movement,  and sent to the visual cortex.

As it is being sent, the original image on the fovea. Is erased so that a new image can be formed.

 

Where the Visual Cortex is continually assembling these tiny snapshots, to form a larger clear visual image.

 

But with this saccadic pattern of movement, 'left-right-above-below-middle'?

The eyes need to be informed about where 'left-right-above-below-middle', actually are?

 

Our Vestibular system in our ears, is where we percieve of these different points.

Where our Brain Stem uses a connection between our eyes and our Vestibular system, that is called our Vestibulo-Ocular Reflex.

To manage the direction of the the saccadic movements.

But perhaps you might consider the situation where the Saccadic motor system, isn't being provided with precise Vestibular information? 

So that instead of the eyes automatically moving to these different points?

They are left to wander around?

As they have no 3D compass or guidance system?
 

So that I would rather suggest, that it would be better to focus on developing her Vestibular perception?

As this could be the underlying issue.

 

Though you also mentioned that in June she got Vertigo and the Vestibular work stopped.

But this Vertigo can also mean that her Vestibular system, has developed to a point that she can now percieve of vertigo?

[PeterPan]

When you find the VT person/therapist that actually knows how to do that stuff, that will be a find.  Some are just entry level, low paid people who push through worksheets.  That's pretty fine-tuned stuff geodob is describing and it assumes someone who actually has a clue.  

[mom22kids]

Geodob thank you for writing that out in such and easy to understand way!  And looking at it from that perspective does support my fundamental suspicion that she mainly needs to stay on the Vestibular building path we are on.

 

We did also view the Vertigo as a "good" thing.  It certainly happened at a time where she was the most vestibular "aware" and even though we stopped Astronaut Training (spinning) her Vestibular system seems to have been retained to some degree.  Or it has kicked back on quickly now that we have resumed??  Just this past week I notice that we she gets on her therapy swing she has a "startle" moment where she seems to catch herself as if she might fall backward.  This is new for her.  She had no sense of this ever before.

 

As well when driving I came up upon a red light and she did a "whoa" as I stopped.  She did the same when we pulled in the driveway.  All new sensations for her.  So that is even potentially why she performed better overall on the Visual test this year?

 

 

[mom22kids]

When you find the VT person/therapist that actually knows how to do that stuff, that will be a find.  Some are just entry level, low paid people who push through worksheets.  That's pretty fine-tuned stuff geodob is describing and it assumes someone who actually has a clue.  

 

My current OT is exactly that needle in a haystack!  She is a gem of an OT!!