Vision Therapy - Convergence Issues

[mrsfellman]

Hello. I had posted on the General Education Board many weeks back about some struggles with my middle son who is 7 and has been in "1st Grade" this last year. After getting some advice there I felt lead to start with an evaluation by Board Certified Developmental Optometrist. DC is already in eyeglasses and has been since he was 4 yrs old. We had his evaluation at the Developmental Optometrist yesterday and I just got home from meeting with her for the results today. They diagnosed him with the following conditions...

Convergence Excess
Pursuit Eye Movement Dysfunction
Saccadic Eye Movement Dysfunction
Spasm of Accommodation bilateral
Paresis of accommodation bilateral
Myopia bilateral

My question is in regards to the Vision Therapy. They are recommending 28 sessions and their whole deal with end up costing close to $5,000. We have Medi-share and I will call tomorrow to see if that is something they will reimburse.  Is this something that I can provide solely at home? Or possibly have provided through our local school system? 

[PeterPan]

They should give you homework, but no you will need to be in-office. He needs to be able to talk with the therapist and start to understand his eye function. It's like saying can you give birth without a midwife. Well actually it's more than that, because at least birth happens anyway. It's like asking can you do your own dental cleaning if I sell you the picks, lol. Even if you had the tools, you wouldn't know quite what to do with them.

Convergence *excess* is a very specific thing, less common than insufficiency. To me, that would be in the sell your cat, do a lot to make that therapy happen. But you could have some options. I don't know if Medishare will help you out. Our VT place had a way to code *some* of the visits, like maybe 1/3, so they'd get covered as medical for insurance purposes. The rest were not covered. So your eye doc could help you on that end. Like they'll say it's for headaches so it's medical and get it covered. But if you go to Medishare and just say hey can I have this, no they might not have to. At least with our regular insurance (anthem/bcbs) that's how it is. Maybe read your policy. You could at least get the part that the doc codes with medical codes covered I would think.

So other ways to make this happen. Now that you know you need this, you could call around to other VT docs and get other prices. Are those sessions 30, 45, 60 minutes? Make sure you're comparing apples to apples. That's working out at $175 an hour, which seems really high honestly. Or are those 30 minute sessions? Are you in a high COL area? I think you might get very different quotes if you call around.

Also start talking with them. Sometimes docs will cut a lower price during less busy hours. Or they'll do once a month with more homework. I don't recommend that for you because I think you have a pretty significant list there that needs some attention from the therapist. You're going to make better progress being in office. But if you call around, yes you might find some range in the pricing there, someone you can afford. Some therapists have a "no child leaves untreated" policy and have sliding scales, Care Credit, or other ways to make it happen. You really just have to talk with them and see. It's not like you're the only one saying this.

My dd got great improvement with VT, so that part was worth it. But the other part of it was learning about herself. She learned how she learns, how her eyes function, how to know what is happening and self-advocate. This has not been a poof and over kind of thing. Her vision has remained complex, so the time working with an excellent therapist was valuable because it let her talk about her vision. Like I called her a couple days ago hashing through tickets for her trip back home, and I'm like hey do you want to see the eye doc when you're here? She's like oh my eyes have shifted, but my glasses are still adequate. I'll wait until August and do it then so it's a final adjustment before going back to college. 

So that's a lot of self-advocacy there, when you go from seeing things a certain way and not knowing why to being able to self-advocate, to realize how your fatigue, etc. are affecting your symptoms. 

I'm sorry it's so expensive. I haven't priced it in a number of years, but I'm hoping that's high and that you can get another doc to do it for less. Is this person a Fellow? It certainly sounds like their list was thorough. If that's the going rate, I don't think you'll regret doing it, even at that. Are they wanting you to pay in blocks, like maybe a month at a time, or all upfront? NEVER pay upfront for more than a month. It only leads to heartbreak. Don't do it. We've had those situations, and people feel locked in when they're unhappy. If the therapist is good, you'll be seeing results and want to continue. If he's not, then you don't want to be locked in. So as long as you're paying a portion at a time, you're safe.

[PeterPan]

Btw, could I just say how wild this is? I mean didn't we start talking about reading problems and that's how we landed on the side issues of get his eyes checked? And this is no small thing, like oh just say everyone has it. This is really specific that he definitely has some developmental vision problems. So hopefully they correct up nicely and he's more comfortable to go back to your reading intervention. That will be really exciting. It really sucks to get handed a $5k bill, but it's also exciting to eliminate a problem and know it will be easier for other things to click.

[mrsfellman]

13 hours ago, PeterPan said:

Btw, could I just say how wild this is? I mean didn't we start talking about reading problems and that's how we landed on the side issues of get his eyes checked? And this is no small thing, like oh just say everyone has it. This is really specific that he definitely has some developmental vision problems. So hopefully they correct up nicely and he's more comfortable to go back to your reading intervention. That will be really exciting. It really sucks to get handed a $5k bill, but it's also exciting to eliminate a problem and know it will be easier for other things to click.

Yes, we did start with his reading issues I posted on the other board and you've been such a great help. Thank you!! I actually was recommended to this forum and The Well Trained Mind by my Aunt In Law who's sons are all in their 20's and I was talking over these issues with her the other day and the advice I'm getting and she actually thinks you might be the person that helped her out on her several years back with one of her sons and his issues. He would have been older middle school into high school at that time. Anyways, thanks again. In one sense it is good to know that my mommy gut was right and that it isn't a completely "strong-willed" "knocking heads issue". However, then there is the "wow there is a legitimate problem to tackle". I know this feeling from when I was first diagnosed with my CHD's 9 yrs back at age 26. 

13 hours ago, PeterPan said:

They should give you homework, but no you will need to be in-office. He needs to be able to talk with the therapist and start to understand his eye function. It's like saying can you give birth without a midwife. Well actually it's more than that, because at least birth happens anyway. It's like asking can you do your own dental cleaning if I sell you the picks, lol. Even if you had the tools, you wouldn't know quite what to do with them.

Convergence *excess* is a very specific thing, less common than insufficiency. To me, that would be in the sell your cat, do a lot to make that therapy happen. But you could have some options. I don't know if Medishare will help you out. Our VT place had a way to code *some* of the visits, like maybe 1/3, so they'd get covered as medical for insurance purposes. The rest were not covered. So your eye doc could help you on that end. Like they'll say it's for headaches so it's medical and get it covered. But if you go to Medishare and just say hey can I have this, no they might not have to. At least with our regular insurance (anthem/bcbs) that's how it is. Maybe read your policy. You could at least get the part that the doc codes with medical codes covered I would think.

So other ways to make this happen. Now that you know you need this, you could call around to other VT docs and get other prices. Are those sessions 30, 45, 60 minutes? Make sure you're comparing apples to apples. That's working out at $175 an hour, which seems really high honestly. Or are those 30 minute sessions? Are you in a high COL area? I think you might get very different quotes if you call around.

Also start talking with them. Sometimes docs will cut a lower price during less busy hours. Or they'll do once a month with more homework. I don't recommend that for you because I think you have a pretty significant list there that needs some attention from the therapist. You're going to make better progress being in office. But if you call around, yes you might find some range in the pricing there, someone you can afford. Some therapists have a "no child leaves untreated" policy and have sliding scales, Care Credit, or other ways to make it happen. You really just have to talk with them and see. It's not like you're the only one saying this.

My dd got great improvement with VT, so that part was worth it. But the other part of it was learning about herself. She learned how she learns, how her eyes function, how to know what is happening and self-advocate. This has not been a poof and over kind of thing. Her vision has remained complex, so the time working with an excellent therapist was valuable because it let her talk about her vision. Like I called her a couple days ago hashing through tickets for her trip back home, and I'm like hey do you want to see the eye doc when you're here? She's like oh my eyes have shifted, but my glasses are still adequate. I'll wait until August and do it then so it's a final adjustment before going back to college. 

So that's a lot of self-advocacy there, when you go from seeing things a certain way and not knowing why to being able to self-advocate, to realize how your fatigue, etc. are affecting your symptoms. 

I'm sorry it's so expensive. I haven't priced it in a number of years, but I'm hoping that's high and that you can get another doc to do it for less. Is this person a Fellow? It certainly sounds like their list was thorough. If that's the going rate, I don't think you'll regret doing it, even at that. Are they wanting you to pay in blocks, like maybe a month at a time, or all upfront? NEVER pay upfront for more than a month. It only leads to heartbreak. Don't do it. We've had those situations, and people feel locked in when they're unhappy. If the therapist is good, you'll be seeing results and want to continue. If he's not, then you don't want to be locked in. So as long as you're paying a portion at a time, you're safe.

I can make the payments happen if necessary. I just wanted to make sure that it IS necessary, which it sounds like it. We just sold our "dream home" we built out in the country to have a smaller base home here in Tulsa, OK so we could start traveling semi-fulltime in our Class C. We have been planning to leave out on a longer leg at the end of June/first of July and not come back til October. I discussed this with the therapist and she recommended getting as many weeks in before we leave and continuing the in home work while gone and resume when we come back. Since we are in complete control over our schedules and plans I can change them to stay home and get in all the therapy first, however, the boys and especially this DC are very invested in us hitting the road and pushing it out much more will really sting. 

As for payment, they had multiple options on how to pay. You just get a 15% "discount" if you pay for all the recommended sessions up front. There is at least one other Board Certified therapist here in Tulsa I can check prices with but when I filled out their online form a few weeks back when I was looking for someone they never called or emailed me in response to my submission. Of course, they might not have received it. There is one other person I know of in our old home town who did/does VT but she is not doing it currently and only worked 1 day a week. Her husband is a Optometrist and apparently he is referring his patients down to the person we saw this week. 

On a side note, as I talked with the Therapist yesterday I found out my own vision needs for "Prism" in my glasses is something similar to what my son is experiencing and we discussed later when we are home for a longer stint I may do some therapy of my own. She currently is working with a similar needs patient who is 56. So apparently I'm not too old at 35 to get some help myself.  

[PeterPan]

11 minutes ago, mrsfellman said:

I actually was recommended to this forum and The Well Trained Mind by my Aunt In Law who's sons are all in their 20's and I was talking over these issues with her the other day and the advice I'm getting and she actually thinks you might be the person that helped her out on her several years back with one of her sons and his issues.

Oh that is hilarious. That makes me happy that her sons are doing well too! 

12 minutes ago, mrsfellman said:

it is good to know that my mommy gut was right and that it isn't a completely "strong-willed" "knocking heads issue".

Yes, yes. When people come on dealing with conflict at that level, there's usually something going on, an SLD or a physical problem or SOMETHING. Our church tells us kids are bad, come out sinning, etc., but reality is kids come out wanting to please, generally do comply when the task is in reach, and are going to struggle to self-advocate or even realize what the problem is. They need help and butting heads is a sign something is wrong and to back up and figure it out. Now kids do wrong things, sure. But they also really want to please us. It's sort of a grace they're given, a protectiveness of the age. We have a lot of responsibility to help our kids and figure things out for them when they can't put it into words. 

Sometimes though I get frustrated and I just tell my ds straight I CAN'T TELL what's going on and why he's having that behavior, lol. 

15 minutes ago, mrsfellman said:

"wow there is a legitimate problem to tackle".

Yup, and it doesn't get any easier. You get the first one and then there will be another, guaranteed. Doesn't get easier. And sometimes the "professionals" whomp you around and leave you feeling like you can't do anything, and it takes time to recover your spunk and go no, we've got this, we'll figure it out. Even when you're paid help, YOU are a key part of the success.

17 minutes ago, mrsfellman said:

I can change them to stay home and get in all the therapy first,

Ok, this needs some creativity. Has he had an OT eval? Have you checked him for retained reflexes? Retained reflexes are a HUGE huge, huge, huge, huge reason behind developmental vision problems. What I would do, being the ornery sort, is test for retained reflexes, maybe get an OT eval in real fast if you find someone who actually has significant experience treating them, go travel for 45 days while you do those exercises for every retained reflex OBSESSIVELY THOROUGHLY AND RELIGIOUSLY. Then come back with 45 days of RV life under your belt, park somewhere and begin some VT. 

It's possible that if you do enough reflex work the VT issues will settle a bit and treat faster. It will let you save some money toward the VT so you're on the forward end of it. It will solve the emotional problem that you're not RVing when you had wanted to. The world will not end if you wait the 45 days and some things caused by the reflexes might get better.

And, if you're thinking about it, you might park your RV near a different optometrist, one who costs less money. ;)  Like the world is your oyster, right? So look around a few states, find a park or place where you want to be, and find a cheaper dev optom. near there. Boom.

When my dd got eval'ed for VT, we didn't have money to start. Like we really did not have money to start. That was a hard thing to wait like that. In reality, it was a very short wait, but it was very hard to do that and feel like I wasn't doing right by my kid. I think if you're doing reflex work that is setting the stage for the vision work to go well (which it absolutely well), then that is time well spent. If it lets your finances get a bit more in order and solves other problems, that's good too. I would feel ok with that.

I mean, do what you want. But I think testing the reflexes would give you some data. If the optometrist doesn't test them, then that's an issue. If she does, part of what you're paying $5k for is for her to treat them, kwim? That you can do yourself or do with the help of an OT. There's also Pyramid of Potential which has some downloads and videos. They cost a little, but $100 is nothing compared to $5k, lol. 

[PeterPan]

24 minutes ago, mrsfellman said:

You just get a 15% "discount" if you pay for all the recommended sessions up front.

Ouch. I'm just telling you the track record on the boards with that is bad. I would be SO CAUTIOUS. I hope she's great. But if she's great, why is she strangling people in like that?

I'd just go drive my RV somewhere else.

You have zero recourse if you pay her that much upfront and are unhappy. Sometimes those therapists are very controlling and say their clients won't continue if they don't pay upfront. There are reasons behind this and I'm saying a good practice should not have to do that.

[PeterPan]

26 minutes ago, mrsfellman said:

On a side note, as I talked with the Therapist yesterday I found out my own vision needs for "Prism" in my glasses is something similar to what my son is experiencing and we discussed later when we are home for a longer stint I may do some therapy of my own. She currently is working with a similar needs patient who is 56. So apparently I'm not too old at 35 to get some help myself.  

Absolutely!! Not to be too rocket sciency obvious, but whatever he does for homework you're going to do too. Just have him do the exercises in turn to you. 

[PeterPan]

32 minutes ago, mrsfellman said:

There is at least one other Board Certified therapist here in Tulsa I can check prices with but when I filled out their online form a few weeks back when I was looking for someone they never called or emailed me in response to my submission.

Yeah, I don't know. You can write the docs and their lead therapists often directly through the COVD website. Probably something happened. I'd just pick up the phone. And really, widen your net because with that RV you have lots of options. What happens if you look wider? My dd is in OK right now, btw. It has more than I expected, so maybe you have more options? 

There's someone board certified in St. Louis. You could easily kill a number of weeks there, mercy. Lots of people showing up in OKC too. Or maybe come to Louisville? Very interesting place, lots to do. From there you could day trip up to Cincy, etc.

Edited June 14, 2019 by PeterPan

[mrsfellman]

So here is the breakdown on their costs...

28 - 45 min sessions (recommended 2 x a week) - $160 each
3 Progress Exams PLUS 2 Post-Therapy Follow ups at $90 Each
Vision Therapy Aids Fee - $200
Unlimisted (as prescribed by Dr.) rental time of Syntonizer (light therapy unit) - $100

Pay all up front for 15% off. Make 2 payments and get 10% off. Make Four Payments (no discount) or option to go through a finance company.

I did get a little info from the other Board Certified place here in Tulsa.
They charge $150 a session for 45 min therapy sessions. Do not know other costs. They do 32 Sessions always. 

No we have not had any OT Evals. My oldest son has and I can call the place we went through to see if they could get Middle son in soon.

I like the "world is our Oyster"!! We are actually planning to hit Saint Louis for a week or so so I may have to look into that. 🙂

[PeterPan]

Ok, so I'll give you some data. When my dd did VT, she probably did have some retained reflexes (grrr) and it was very painful, very fatiguing. VT is not painful for everyone, but it's very common for it to be fatiguing. I think planning to do it during a down time when you're doing things that are more distance vision can be good. That way what he's doing when he's not doing his therapy is relaxing. Doing the VT on top of school work for some kids is very hard. Not for all, but some. 

There are also a lot of ways to skin a cat. I've never seen that Syntonizer, looks kinda crazy to me, but who knows, kwim? It seems like most of the people who put in enough time make progress. It's when people aren't being given homework or are given just a little bit and do the same thing over and over (no progression of skills, not adding more tasks) that they don't make progress. Would those 2X a week long sessions be it or homework? 

My dd could do in 2X30 (back to back because we had a drive) more than than I could get done with her in a week. They really kicked some butt. But is 2X45 really necessary? I've heard of VT practices doing ALL therapy in-office. Weekly sessions are more likely to keep you on track and motivated than highly spaced sessions. We've had people on the boards do say monthly, and it can be done. But just in general, I'd get some frequency to keep up your momentum.

So 14 weeks, hmm. Does she weave in visual processing or work in stages? Our VT place worked in stages, so they did convergence, etc. etc. and THEN when that was all passed then they did visual processing. But some places merge them. 

I think I personally would save 5 weeks, do reflexes, then go back and do the 14 straight. I'm just really of the kick butt mentality, like when you do it, do it. Therapies always fall to the wayside with us when we travel, but maybe you're different, lol. And if you have no reflexes to integrate (which I doubt, but hey) then that's useful data too. Then I would probably have a hard time traveling, knowing my kid really needed the therapy. But finding another location where you could park and adventure while working, that could work. 

Yes, as you say, some VT places push kids through notebooks. They tweak, but it's pretty predictable how it rolls and how long it will take. My guess is you're going to see noticeable progress within 2 months. That 14 weeks is 3 months. That's really not so bad. You kind of have to think end goal, like where this is getting you. If it lets his vision kick in, he'll enjoy RV life so much more. It would be pretty natural to read while riding, and the reading will get more comfortable as the convergence issues are fixed. 

https://en.wikipedia.org/wiki/Primitive_reflexes  Here's a list of common reflexes. You can search each one on youtube, find the tests, and do it yourself. 

[City Mouse]

When my DD did VT, we only had 2 or 3 office visits, but did have stuff to do at home every day.

Public schools do not provide Vision Therapy. Some school based OTs will sometimes do some VT type stuff, but OT is considered a related service meaning that the student must qualify for SPED services first then OT may be provided if there is a need.

[mrsfellman]

23 hours ago, PeterPan said:

Ok, so I'll give you some data. When my dd did VT, she probably did have some retained reflexes (grrr) and it was very painful, very fatiguing. VT is not painful for everyone, but it's very common for it to be fatiguing. I think planning to do it during a down time when you're doing things that are more distance vision can be good. That way what he's doing when he's not doing his therapy is relaxing. Doing the VT on top of school work for some kids is very hard. Not for all, but some. 

There are also a lot of ways to skin a cat. I've never seen that Syntonizer, looks kinda crazy to me, but who knows, kwim? It seems like most of the people who put in enough time make progress. It's when people aren't being given homework or are given just a little bit and do the same thing over and over (no progression of skills, not adding more tasks) that they don't make progress. Would those 2X a week long sessions be it or homework? 

My dd could do in 2X30 (back to back because we had a drive) more than than I could get done with her in a week. They really kicked some butt. But is 2X45 really necessary? I've heard of VT practices doing ALL therapy in-office. Weekly sessions are more likely to keep you on track and motivated than highly spaced sessions. We've had people on the boards do say monthly, and it can be done. But just in general, I'd get some frequency to keep up your momentum.

So 14 weeks, hmm. Does she weave in visual processing or work in stages? Our VT place worked in stages, so they did convergence, etc. etc. and THEN when that was all passed then they did visual processing. But some places merge them. 

I think I personally would save 5 weeks, do reflexes, then go back and do the 14 straight. I'm just really of the kick butt mentality, like when you do it, do it. Therapies always fall to the wayside with us when we travel, but maybe you're different, lol. And if you have no reflexes to integrate (which I doubt, but hey) then that's useful data too. Then I would probably have a hard time traveling, knowing my kid really needed the therapy. But finding another location where you could park and adventure while working, that could work. 

Yes, as you say, some VT places push kids through notebooks. They tweak, but it's pretty predictable how it rolls and how long it will take. My guess is you're going to see noticeable progress within 2 months. That 14 weeks is 3 months. That's really not so bad. You kind of have to think end goal, like where this is getting you. If it lets his vision kick in, he'll enjoy RV life so much more. It would be pretty natural to read while riding, and the reading will get more comfortable as the convergence issues are fixed. 

https://en.wikipedia.org/wiki/Primitive_reflexes  Here's a list of common reflexes. You can search each one on youtube, find the tests, and do it yourself. 

After reading this yesterday I realized the boys are due for well visits (both younger boys are April babies) and went ahead and scheduled to have Middle DS have his next week with our Pediatrician so I can go over all of this and see if she thinks/can refer for an OT eval. 

As for the O.D, FCOVD we saw this week she outlines in the paperwork she provided us Short Term & Long Term Objections, Specific Techinques & Activites and also "Education Recommendations". The sentence prior to her "short term objectives" for Elijah it states "These are the specific objectives that I will use to monitor progress at each progress evaluation".  Short term objectives listed are: 
Improve accommodation in each eye
Reduce lag of accommodation to +0.50 Diopters
Eliminate esophoria/exophoria
Expand convergence and divergence fusion ranges
Improve saccadic skill
Long term objectives (after completing the Vision Therapy program) listed are:
Ability to maintain clear, comfortable vision during reading and schoolwork
Ability to maintain visual focus for extended periods of time
Improvement of visually guided fine motor activities, such as writing

Specific Techniques & activities to achieve the above objectives will include:
Monocular (one eye at a time) activities designed to equalize the focusing and movement of each eye
Binocular (both eyes together) work to improve efficiency while focusing and moving, using the two eyes together as a team
Activities that integrate specific visual skills, such as focusing and eye movements, with real-world activities such as reading, writing, and observing moving objects at different distances.
A combination of free-space activities, pencil/paper activities, activities using lenses of different powers and computer-based activities. 

Under the Education Recommendations I see she put that "A Visual Information Processing Evaluation was performed to determine how Elijah makes sense of visual information" and that  "An Auditory Processing Evaluation is recommended".

There is a good chance our Insurance will cover if its coded as a medical need. Our annual household portion is almost met as of yesterday and will definitely be met as I'm due for an echo this year myself and my yearly cardiology appt will apply. However I won't know for sure that it's covered until AFTER I submit the bill. 

I also have my oldest son going through an Orthodontic "program" right now to help expand his over crowd mouth for this adult teeth. He has a Rapid Palate Expander in THIS Monday is getting braces on the top 4 teeth. At some point he will get braces placed on the bottom 4 teeth and I have no idea how often I'll need to have him back to Tulsa for these appointments. As much as we are all ready to hit the road I am wondering if we need to keep our traveling this year to a minimum and get these items dealt with. I could definitely weave in some shorter trips and make the therapy happen all at once so we are more free to travel. 

Of course hubby is asking if he'll "just grow out of this". And thinks it's sketchy that the person doing the evaul is "selling" us the therapy. (Okay I'll give him that it does feel a tad off).

[PeterPan]

Well developmental vision problems are developmental, meaning the development got glitched. So it's not a delay that happens later but a process that got stopped that you restart. 

You can test for the retained reflexes yourself and I would. Did the optometrist test for them? The neonatal/primitive reflexes are what need to integrate before the vision reflexes, postural reflexes, etc. can do their thing. Some kids, if they get their reflexes integrated, will have that process kick in and they won't even need VT. It's not a rabbit chase to be doing that but actually the correct developmental order. Yes, your dh is right that sometimes these practitioners are like used car salesman, selling nifty things they learned and knowing squat diddley about how the development works. Now a fellow with COVD, sure probably better. And I have no doubt that your ds has convergence excess. But if she didn't test for retained reflexes, even though they are the developmental precursor step to deal with that could right the entire domino chain, then that's pretty telling. Your dh is right to ask questions and those are the questions you ask.

If you work on the vision but DON'T integrate the reflexes, you end up with splinter skills essentially and they aren't strong and can even regress.

Hmm, that's pretty telling if she's saying you ought to go for an APD eval. APD is evaled by an experienced audiologist using a special isolation booth and a test like the SCAN. Most common symptom is difficulty in background noise. Again, you're saying another part of the brain is having glitches in processing, and that can be affected by retained reflexes. I took my dd for the testing and she wears a filter from ABLE Kids. I'm just saying do the reflex testing and reflex work FIRST. 

If he is showing issues on the APD eval, I would also get SLP evals and full psych evals. Usually you're going to end up with more diagnoses at that point, like ADHD or dyslexia. The APD can have significant effect on language, with phonological processing, narrative language, all kinds of things. They'll liken it to a fire in a row of townhouses and one thing is on fire and more are on fire.

Yes, my ds had a palate expander, not fun. The braces we did were very fast, just to tidy. They're off and I think we go back when he's 12 or something. But I can see where it feels like you've got a LOT going, wow!

So the retained reflexes are one of the early dominoes in the sequence where all these things develop (vision, posture, language, etc.). If you can find an OT who is good with retained reflexes, that will be good. You don't need a referral for OT just to schedule, but you do possibly for your insurance/medishare. OTs really vary, so I wouldn't bother if you don't find one who actually knows something about them. It's the most voodoo, vague field out there. I've used scads of them and it's just a frustrating field. They aren't trained in grad school for testing retained reflexes, so it's something they bothered to learn later, if at all. Honestly, I've never had any OT do a GREAT job with them. I had one do an average to mediocre job. I finally used a PT someone recommended, and she was using info from the Pyramid of Potential site I told you about. You could do that at low cost yourself and test all your kids.

Try a good university for the APD testing. Will save you a bunch of money. Our university will screen for free now and the testing is very inexpensive. They're just so big they have funding or grants or something. Makes it a really easy recommend when it's free, and that's how you usually start out, with a baseline audiology eval and the screening portion of the SCAN. From there they say yes do the full SCAN or don't bother. That's a longer, $$ eval. 

The visual processing will often improve as part of VT just by getting the eyes working together better. Convergence excess (or insufficiency for that matter) is pretty nasty and you probably have been seeing symptoms of it and don't realize. Most people don't really THINK about their vision, kwim? My dd had all kinds of funny things she had done for years that we thought were just her. As they improved with the VT, it was pretty astonishing. 

[mrsfellman]

1 hour ago, PeterPan said:

Hmm, that's pretty telling if she's saying you ought to go for an APD eval. APD is evaled by an experienced audiologist using a special isolation booth and a test like the SCAN. Most common symptom is difficulty in background noise. Again, you're saying another part of the brain is having glitches in processing, and that can be affected by retained reflexes. I took my dd for the testing and she wears a filter from ABLE Kids. I'm just saying do the reflex testing and reflex work FIRST. 

If he is showing issues on the APD eval, I would also get SLP evals and full psych evals. Usually you're going to end up with more diagnoses at that point, like ADHD or dyslexia. The APD can have significant effect on language, with phonological processing, narrative language, all kinds of things. They'll liken it to a fire in a row of townhouses and one thing is on fire and more are on fire.

Yes, my ds had a palate expander, not fun. The braces we did were very fast, just to tidy. They're off and I think we go back when he's 12 or something. But I can see where it feels like you've got a LOT going, wow!

So the retained reflexes are one of the early dominoes in the sequence where all these things develop (vision, posture, language, etc.). If you can find an OT who is good with retained reflexes, that will be good. You don't need a referral for OT just to schedule, but you do possibly for your insurance/medishare. OTs really vary, so I wouldn't bother if you don't find one who actually knows something about them. It's the most voodoo, vague field out there. I've used scads of them and it's just a frustrating field. They aren't trained in grad school for testing retained reflexes, so it's something they bothered to learn later, if at all. Honestly, I've never had any OT do a GREAT job with them. I had one do an average to mediocre job. I finally used a PT someone recommended, and she was using info from the Pyramid of Potential site I told you about. You could do that at low cost yourself and test all your kids.

Try a good university for the APD testing. Will save you a bunch of money. Our university will screen for free now and the testing is very inexpensive. They're just so big they have funding or grants or something. Makes it a really easy recommend when it's free, and that's how you usually start out, with a baseline audiology eval and the screening portion of the SCAN. From there they say yes do the full SCAN or don't bother. That's a longer, $$ eval. 

The visual processing will often improve as part of VT just by getting the eyes working together better. Convergence excess (or insufficiency for that matter) is pretty nasty and you probably have been seeing symptoms of it and don't realize. Most people don't really THINK about their vision, kwim? My dd had all kinds of funny things she had done for years that we thought were just her. As they improved with the VT, it was pretty astonishing. 

Would the APD have been done when he had his testing last summer with the Audiologist? I can call the office Monday and ask but the only thing that presented during that testing was the pressure on his ear drum.

Here is a link from COVD for the Dr. we saw last week.
http://locate.covd.org/Search/Detailed?profileId=09C26AFC-9ED8-48EA-BFF8-D501DF644D84&markerId=2&lat=36.0331952&lng=-95.9053433&address=8988-D1 S. Sheridan Tulsa%2C OK 74133&ZipCodeOrAddress=4812 South 70th East Avenue%2C Tulsa%2C OK%2C USA&SearchRadius=15&x=84&y=22

[PeterPan]

No APD is a specialized screening and you would have had to ask for it. There are audiologists who specialize in it, so not every audiologist would even do it. There's some controversy with it, so it would be interesting to know what symptoms the eye doc was seeing. You can have anything from difficulty hearing in background noise (my dd) to really serious phonological and language issues, a range. So makes you wonder what the eye doc was noticing. 

What would cause pressure on his ear drum? Allergies or an infection or something? I don't know anything about that. Could it explain the symptoms the eye doc was noticing? Issues with background noise, phonological processing, etc. are not mysterious. You'll be noticing it too. 

[PeterPan]

34 minutes ago, mrsfellman said:

Here is a link from COVD for the Dr. we saw last week.
http://locate.covd.org/Search/Detailed?profileId=09C26AFC-9ED8-48EA-BFF8-D501DF644D84&markerId=2&lat=36.0331952&lng=-95.9053433&address=8988-D1 S. Sheridan Tulsa%2C OK 74133&ZipCodeOrAddress=4812 South 70th East Avenue%2C Tulsa%2C OK%2C USA&SearchRadius=15&x=84&y=22

Wow, things have gotten really swank in the last 10 years! LOL I'm not trying to say the eye doc is good or bad. I'm just saying you can know the issues and sort it out for yourself. The place we used was a big practice like that, lots of therapists, blah blah, and they didn't test retained reflexes. It wasn't to their credit, but it wasn't their strength either. They usually just refer for OT if kids aren't progressing properly, thanks. 

[mrsfellman]

11 minutes ago, PeterPan said:

No APD is a specialized screening and you would have had to ask for it. There are audiologists who specialize in it, so not every audiologist would even do it. There's some controversy with it, so it would be interesting to know what symptoms the eye doc was seeing. You can have anything from difficulty hearing in background noise (my dd) to really serious phonological and language issues, a range. So makes you wonder what the eye doc was noticing. 

What would cause pressure on his ear drum? Allergies or an infection or something? I don't know anything about that. Could it explain the symptoms the eye doc was noticing? Issues with background noise, phonological processing, etc. are not mysterious. You'll be noticing it too. 

At the time we assumed allergy fluid build up and we did a round or two of Flonaise & Clariten. He is back to sniffling alot and some chest congestion at night so I've started him back on those today.  He did have SEVERAL ear infections during his first 2 + yrs. Our Dr at the time was about to send him over to the ENT to see if needed tubes but then he didn't get another one for about a year. Around that time thought was when he went from being a wonderful, easy baby to a very hard to deal with emotional child. During this same time was when I had baby boy #3. Actually  6 days after Elijah turned 2 yrs Jeremiah was born. I had all 3 via Cesarean after being in active labor. He has been a struggle since. 

As I am trying to read about the Retained Reflexes I see that those Brain Balance places can test for those. We do have one here in Tulsa and I have an acquaintance that works there. Would that be a decent place to look? I am hoping our pediatrician can help me with that.

[PeterPan]

Brain Balance is $$$$$$$$ and has a really spotty reputation. Like I said, I'd use Pyramid of Potential, which has a dvd or download for under $100. It would have the info you need. 

Yes, babies born via c-section are more likely to have retained reflexes because the reflexes that would have been used in birth to help them get through the birth canal didn't get used. Did they have any anomalies with crawling, etc? Anything funny they do with their pencils, sensory seeking, whatever?

 

[PeterPan]

I'm not saying BB is bad, only that I've heard stories and think you can do what you need for way less. Like start with the $100 option, see where you're at, and then move up to the $$$ option, kwim? LOL

Edited June 15, 2019 by PeterPan

[PeterPan]

http://www.pyramidofpotential.com/primitive-reflexes/  She's got different stuff, so fish around for an option that seems good to you. (videos, downloads, whatever) It's the system the PT used that helped us with reflexes. The exercises are a bit differnet from what you see online for free and they worked exceptionally well. We did them 45 days straight and the results were ASTONISHING. Well actually she wanted 45 days straight. It took us a good month just to get ds complying with them because his behavior was so wild. But once we got him doing them, it was astonishing. 

You can find tests for most of them online for free too if you google. That's why I gave you a link with the list of reflexes. BB can be thousands of $$$ and you can test for free and decide for yourself. There's going to be tons to spend your money on, so it's good to hold back and be sure. Your dh's cynicism is a bit right on this. This is something you can explore for free. There's also a book on integrating the STNR and ATNR that is really good that your library system might have.                                              Stopping ADD/ADHD and Learning Disabilities: A Unique and Proven Treatment without Drugs for Eliminating ADD/ADHD and Learning Disabilities in Children and Adults                                     

Edited June 15, 2019 by PeterPan

[mrsfellman]

My oldest son has SPD issues and ADHD. He "army crawled" but never did the normal crawl. With DS#2 I really don't remember. It's sad. I remember he climbed alot before walking. My own brain is feeling overwhelmed trying to read and understand all of this so I must have missed or forgot that link. I appreciate you giving it again because I'd much rather attack any problems in the most thorough AND economical way. We don't mind finding the funds if it is the best option but only then, KWIM? 

[PeterPan]

So the basic idea with reflex integration is that you finally USE it and the body clicks with like ok I used that, put it away, done. So the it integrates into the neurological system and isn't there constantly to be activated. 

My ds was mouthing, and of course that is a rooting reflex, something infants do. We have other reflexes that help us twist in the birth canal to be born, learn to crawl, learn to stand, etc. So any of them that didn't get used and put away (integrated) need to be worked on. 

His congestion is kind of curious. He may have some asthma tendencies. Do his bowels work well? Like does he have a bowel movement every day? It's a thing to check.

I assume he's good with this, but how is his self-awareness? Like can he tell you when he's hungry or hurt or has a headache or needs to poo? Is he unusually sensitive or under-responsive for sensory? 

You were talking about an OT referral. I would think the ped is going to need to see something larger, some reason to refer. Like my kids both had sensory issues, so the OT referral was obvious. Anything like discomfort writing, difficulty self-regulating, fatiguing when chewing, not being able to say how he feels, there can be lots of reasons to refer. And of course it's also nice if he doesn't have them. 

[PeterPan]

2 minutes ago, mrsfellman said:

My oldest son has SPD issues and ADHD. He "army crawled" but never did the normal crawl. With DS#2 I really don't remember. It's sad. I remember he climbed alot before walking. My own brain is feeling overwhelmed trying to read and understand all of this so I must have missed or forgot that link. I appreciate you giving it again because I'd much rather attack any problems in the most thorough AND economical way. We don't mind finding the funds if it is the best option but only then, KWIM? 

Ugh. Well your fun has begun. Yes, the problem initially is you feel like ok if I plunk out $10k or whatever, I'll cure my kids, I can make this better, it will be worth it. But what you find is there's sorta some stuff that will improve and some stuff that will suck forever.

With that SPD + ADHD I'm going to go back to my question on the self-awareness. The fancy term is interoception. It's a really hot topic right now, but it affects a LOT. 

So you've had OT evals or no OT evals? Given that history with crawling, he's probably going to have retained reflexes, yes. His is his comfort with fine motor? Toileting, tying shoes, riding a bike, or other age-appropriate skills?

So do what you want, but unless that optometrist is testing the reflexes and going to start treating them immediately, like it's really a thing she does, I would do the reflexes and then go back to the vision question. You probably have some work to do there. And you won't know unless you just flat ask. Like email and ask hey do you refer out for retained reflexes or did you test those or do you treat those. What usually happens around here is I get a lot of moving on to the next question like they didn't think it was very important. Pretty telling.

Vision develops with reflexes and it's the dominoes, a sequence. Primitive/neonatal, postural, vision. So you tell me why eye docs treat vision without working on the precursor problems that caused the vision problems. ;)  When you're talking $5k per kid, it's right to ask these questions. It has nothing to do with whether her tools are great, but whether it makes sense and holds up to scrutiny. If you do therapy for an end product without building the foundation, it's called splinter skills. So then the next therapist will test and be like my lands why do you have all these holes??? Because they moved forward in one area and didn't bring everything up.

My dd had splinter skills with her leg strength. We did ice skating hours every day and she was even reasonably good. She got to a point where she couldn't do the spins and the eye doc people referred us for OT. The OT is like my lands how did you even skate? The rest of her is riddled with dyspraxia and low muscle tone and discoordination, lol. Splinter skills. She worked one area a ton (camps, practicing, etc.) and didn't have everything ELSE. Eventually that uneveness bit her in the butt and she completely dropped skating.

You can't make everything perfect no matter how much you spend. You want to be very slow on big $$$ items right now because you're about to get hit with a bunch and hit times 2. Very few people can do everything and sometimes prioritizing helps. Go easy to make sure you have the money for the things you MOST need.

[PeterPan]

And we're not talking a long time here. I'm a HUGE fan of VT. To me, you're going to want to do everything it takes to make VT happen. But it takes maybe 45 days of consistent effort to get those reflexes integrated, and doing that could make everything everything everything go much better. That's not a long time to wait and it might make your other issues work out better.

I would get the psych evals after the VT. I would get the OT. If you can get BB for free sure do BB, lol. I think you're going to need psych evals and the BB would be eating up funds for good evals. The APD evals, if you actually need them (get the screener first) are $1k-ish sometimes. So I think BB is taking away from other things that need to get done and it can be done other ways. But maybe triage, see how far you get with each step. I think you'll know what you want. Don't rush because these are pretty big ticket things, between VT and psych evals and possible APD evals.

Does medishare cover psych evals? That gets kinda in the weeds and ugly. We had friends urge us to join a plan like that years ago and we didn't. You may have some issues there where you're left holding the bag on some of these evals. 

Edited June 15, 2019 by PeterPan

[PeterPan]

You need a hot tub in that RV so you can destress from all this. 

[mrsfellman]

1 hour ago, PeterPan said:

Ugh. Well your fun has begun. Yes, the problem initially is you feel like ok if I plunk out $10k or whatever, I'll cure my kids, I can make this better, it will be worth it. But what you find is there's sorta some stuff that will improve and some stuff that will suck forever.

With that SPD + ADHD I'm going to go back to my question on the self-awareness. The fancy term is interoception. It's a really hot topic right now, but it affects a LOT. 

So you've had OT evals or no OT evals? Given that history with crawling, he's probably going to have retained reflexes, yes. His is his comfort with fine motor? Toileting, tying shoes, riding a bike, or other age-appropriate skills?

So do what you want, but unless that optometrist is testing the reflexes and going to start treating them immediately, like it's really a thing she does, I would do the reflexes and then go back to the vision question. You probably have some work to do there. And you won't know unless you just flat ask. Like email and ask hey do you refer out for retained reflexes or did you test those or do you treat those. What usually happens around here is I get a lot of moving on to the next question like they didn't think it was very important. Pretty telling.

Vision develops with reflexes and it's the dominoes, a sequence. Primitive/neonatal, postural, vision. So you tell me why eye docs treat vision without working on the precursor problems that caused the vision problems. 😉  When you're talking $5k per kid, it's right to ask these questions. It has nothing to do with whether her tools are great, but whether it makes sense and holds up to scrutiny. If you do therapy for an end product without building the foundation, it's called splinter skills. So then the next therapist will test and be like my lands why do you have all these holes??? Because they moved forward in one area and didn't bring everything up.

My dd had splinter skills with her leg strength. We did ice skating hours every day and she was even reasonably good. She got to a point where she couldn't do the spins and the eye doc people referred us for OT. The OT is like my lands how did you even skate? The rest of her is riddled with dyspraxia and low muscle tone and discoordination, lol. Splinter skills. She worked one area a ton (camps, practicing, etc.) and didn't have everything ELSE. Eventually that uneveness bit her in the butt and she completely dropped skating.

You can't make everything perfect no matter how much you spend. You want to be very slow on big $$$ items right now because you're about to get hit with a bunch and hit times 2. Very few people can do everything and sometimes prioritizing helps. Go easy to make sure you have the money for the things you MOST need.

I think I got you confused on my boys. DS#1 has the SPD & ADHD diagnoses from a Developmental Pediatrician from two years ago and did some OT therapy for a season. We haven't done anything specific with him sense 2nd grade (he is finishing up 4th grade now). Interestingly he is my "mouther" that likes to chew or mouth on things and it still hasn't gone completely away.

My DS#2 is the one I've been asking about recently who had the VT eval this past week. He has never had an OT eval or any diagnosis done. Only thing I've had checked prior to the VT eval was his hearing and of course his eyes by a Pediatric Ophthalmologist.

DS#3 is an easy go lucky just turned 5 yr old that I haven't even begun to work "school work" with.  
 

 

[Storygirl]

Although I've had two children tested by a COVD, neither needed vision therapy, so I can't speak about that. But I will chime in about two minor things in this thread.

First, go ahead and ask the orthodontist how often they will need to see your son in office. At one orthodontist we went to, it varied, but at our current ortho, the appointments are at regular times --- always five weeks apart for my boys, and always ten weeks apart for my daughter. So it can be predictable, and you can just ask.

One thing to be aware of is that orthodontic things can break, and you might need to have an appointment on quick notice. Brackets can come off and need to be reattached. Wires can come lose and start poking the sides of the mouth, etc. We moved while my kids were still in braces and had to drive 2.5 hours back for the ortho appointments. So a five hour round trip. This was annoying for the regular appointments, but was actually a problem for those emergency times. There were times that we had to drive all of those hours for a 5 minute fix, which was really not fun. And times where the kids had to wait a few days or a week for us to fit a trip into our schedule.

So I would be a little wary about traveling too far away. But I am generally risk averse, and other people probably wouldn't change travel plans. I guess it just depends on how far you were planning to go.

Secondly, this is just my personal opinion, but I am also leery about Brain Balance. They just hire people and show them what to do. So the employees do not really have specialized training. Compare that to an occupational therapist, who has at least a master's degree and perhaps a doctorate. And OT may be covered by insurance, whereas BB is not. I'm not saying that BB can't help people; I'm just saying I personally would not choose to use them and would go to an OT instead.

Also, I am wondering if the suggestion for an APD screening was due to something they noticed during the evaluation, or if it was due to something that you said when you told them why you were there. I am not against APD screening and had it done for one of my kids. I think it's worth looking into. But also if someone has dyslexia, the trouble with discriminating and remembering sounds can seem like APD when it is not. Yes, you need to get a special screening, and it would not have been done during the regular hearing check.

Another way to go would be to have an ENT appointment, if your pediatrician would refer him for one, since he had some ear issues previously. The ENT that we went to had an audiologist on their team, so we were able to get both a medical and audiologist appointment in the same session. And a language screening test, as well, by an SLP. It was at a children's hospital, and they worked as a team.

I think that addressing the vision issues is a good first step. And checking out the hearing. But since your original post was about reading, I would not put off finding a psych or SLP to run the CTOPP. That is a test for phonological processing (dyslexia). So I would do the VT and look into hearing, and then I would get the CTOPP. If the CTOPP shows concerns, you can then decide if you want to move toward more complete educational testing by a psychologist who can diagnose learning issues. It's always tricky to figure out the order to do things, but that's what I would do, I think.

PeterPan would insert testing for retained reflexes into my list. We haven't had experience with that, so I didn't include it, but if you do some reading online and think there are issues with reflexes, add it in.

So many screenings and tests, I know. It can seem endless, but you just tackle one thing at at time and then go to the next.

[PeterPan]

33 minutes ago, Storygirl said:

We moved while my kids were still in braces and had to drive 2.5 hours back for the ortho appointments. So a five hour round trip. This was annoying for the regular appointments, but was actually a problem for those emergency times. There were times that we had to drive all of those hours for a 5 minute fix, which was really not fun. And times where the kids had to wait a few days or a week for us to fit a trip into our schedule.

Wow, your ortho wouldn't release you from the contract??? I mean you're not the first person ever to move during orthodontics. The ortho I used with my ds for phase 1 has moved into a larger chain. I can look up the name, but it's a chain with offices in many places. So he can be see at any of those offices interchangeably I think. 

[PeterPan]

2 minutes ago, DiannaKennedy said:

Do you have prior posts about retained reflexes, treatment, etc?

We had one, but I don't recall if it was ground-breaking, lol. there's not a lot out there for reflexes that is solid. There are systems, so you can ask what system the OT got trained in. It's not like filling a cavity that is pretty definite, kwim? The basic theory is take whatever the reflex does and do it more till the body decides it has been done enough. But there are systems, some more vague or general than others. Like RMT is one that people will get trained in, and it has a bunch of overall motions that seem to nip some things. So we did RMT with a therapist (who wasn't very skillful at it) and got some things partially integrated, missed others. It was a mess. 

The PT we got referred to by someone who know her record of doing well was using the materials from Pyramid of Potential. They worked for us. Now I'm not sure PoP hits *every* reflex, so I'm always trying to learn more. Like there was something I did with my ds' hands that I think was for Babkin that PoP hadn't covered. But PoP was a good start and it's affordable.

5 minutes ago, DiannaKennedy said:

I just need to gather ALL of the boys tests/treatment records, etc so that she can have a clearer picture before we start the evaluation. 

I'm just gonna be cynical and say that's a nice show of doing a lot. The reflexes are pretty straightforward: test them, they're there, work on them. I don't see the big flurry. OT is always about what's happening right in front of you that you can elicit. I've never had an OT give a rip about the past unless it's to see the IEP and jump start goals. Of course I've also been to some pretty dissatisfactory OTs. 

It's a very vague field and I would not put a ton of money into it. I would get the PoP stuff, see how far you get with that (45 days) and then see if you still need the OT eval. Sometimes it's really good and they maybe connect with the dc at a point where he starts learning about himself and self-advocating. That's a really good synergy and sometimes they can say things that maybe the dc didn't want to hear from you or the dc hears a different way. So there are situations where OT can be good. I've had my ds in OT on and off for years. It's just not something to dump a ton of money into because they tend to have the least concrete goals and make the least substantial progress. It's more like learn it yourself, do it yourself, use them to identify what needs to be done but teach the dc to do it for himself.  

[PeterPan]

51 minutes ago, DiannaKennedy said:

 

I hate to sound like a dummy, but can you tell me WHICH PoP stuff I need? The Growing Brains everyday, or Maintaining Brains Everyday? The website is a wee bit overwhelming for me. 

Maybe write her? I never bought anything because I paid the PT. There are dvds and downloads. Something that lists a lot of the reflexes and shows how to test and do them. http://www.pyramidofpotential.com/primitive-reflexes/  Ok, I see what you're saying. So it looks like Maintaining is reflexes and Growing includes cognitive therapies. Maintaining, at $20, probably is a good deal. https://store.payloadz.com/details/2002496-movies-and-videos-educational-maintaining-brains-everyday.html

[PeterPan]

1 hour ago, DiannaKennedy said:

The audiologist should have performed an APD screening, I would think.

It just varies. Doing APD evals is a specialized thing, so there are audiologists who have the booth and the tests and audiologists who don't. It's $$$$$$ to test privately and almost free at our local university. So if the university specializes in APD and has the tests and people, that can be a great way. Universities don't have a good track record on vision therapy and psych evals, but they seem to do pretty well with APD. Of course with dd they "passed" her by one point on the SCAN and said the lead APD professor would think they were crazy if they referred her for the full. They were right that on all the other aspects she actually tests within range. It's just background noise where she has the problem, and that was clinical and improved with the filter.

[mrsfellman]

On 6/15/2019 at 3:58 PM, PeterPan said:

You need a hot tub in that RV so you can destress from all this. 

Oh I wish!! Our smaller town house only has a very shallow 1970's tub. I miss my big deep jetted tub. 

[Storygirl]

On 6/16/2019 at 1:31 AM, PeterPan said:

Wow, your ortho wouldn't release you from the contract??? I mean you're not the first person ever to move during orthodontics. The ortho I used with my ds for phase 1 has moved into a larger chain. I can look up the name, but it's a chain with offices in many places. So he can be see at any of those offices interchangeably I think. 

We were at the end of the treatment. We'd used that ortho for several years for my younger three to get through their first stage, and we only had a few months left, so it wasn't worth paying any money to anyone else.

[mrsfellman]

 

On 6/15/2019 at 11:49 PM, Storygirl said:

Although I've had two children tested by a COVD, neither needed vision therapy, so I can't speak about that. But I will chime in about two minor things in this thread.

First, go ahead and ask the orthodontist how often they will need to see your son in office. At one orthodontist we went to, it varied, but at our current ortho, the appointments are at regular times --- always five weeks apart for my boys, and always ten weeks apart for my daughter. So it can be predictable, and you can just ask.

One thing to be aware of is that orthodontic things can break, and you might need to have an appointment on quick notice. Brackets can come off and need to be reattached. Wires can come lose and start poking the sides of the mouth, etc. We moved while my kids were still in braces and had to drive 2.5 hours back for the ortho appointments. So a five hour round trip. This was annoying for the regular appointments, but was actually a problem for those emergency times. There were times that we had to drive all of those hours for a 5 minute fix, which was really not fun. And times where the kids had to wait a few days or a week for us to fit a trip into our schedule.

So I would be a little wary about traveling too far away. But I am generally risk averse, and other people probably wouldn't change travel plans. I guess it just depends on how far you were planning to go.

Secondly, this is just my personal opinion, but I am also leery about Brain Balance. They just hire people and show them what to do. So the employees do not really have specialized training. Compare that to an occupational therapist, who has at least a master's degree and perhaps a doctorate. And OT may be covered by insurance, whereas BB is not. I'm not saying that BB can't help people; I'm just saying I personally would not choose to use them and would go to an OT instead.

Also, I am wondering if the suggestion for an APD screening was due to something they noticed during the evaluation, or if it was due to something that you said when you told them why you were there. I am not against APD screening and had it done for one of my kids. I think it's worth looking into. But also if someone has dyslexia, the trouble with discriminating and remembering sounds can seem like APD when it is not. Yes, you need to get a special screening, and it would not have been done during the regular hearing check.

Another way to go would be to have an ENT appointment, if your pediatrician would refer him for one, since he had some ear issues previously. The ENT that we went to had an audiologist on their team, so we were able to get both a medical and audiologist appointment in the same session. And a language screening test, as well, by an SLP. It was at a children's hospital, and they worked as a team.

I think that addressing the vision issues is a good first step. And checking out the hearing. But since your original post was about reading, I would not put off finding a psych or SLP to run the CTOPP. That is a test for phonological processing (dyslexia). So I would do the VT and look into hearing, and then I would get the CTOPP. If the CTOPP shows concerns, you can then decide if you want to move toward more complete educational testing by a psychologist who can diagnose learning issues. It's always tricky to figure out the order to do things, but that's what I would do, I think.

PeterPan would insert testing for retained reflexes into my list. We haven't had experience with that, so I didn't include it, but if you do some reading online and think there are issues with reflexes, add it in.

So many screenings and tests, I know. It can seem endless, but you just tackle one thing at at time and then go to the next.

We settled a few things this weekend about our travels for this calendar year and how we will approach the VT & Ortho issues. I spoke with the Ortho this morning and he is not due back until a few weeks after we return in Aug and we will be staying close to home base until his palate expander is out in early Nov. There shouldn't be any problems while we are on the road but if one arises we will find a local Ortho or Dentist to assist. 

I'll steer clear of Brain Balance. It was just something that popped up in m Google search and my brain connected it with a client's daughter worked at the Tulsa one. 

I'll have to bring up the ENT stuff with our Pedi on Thursday and see if she would recommend seeing one. He is still struggling with the **wonderful** Oklahoma allergy symptoms. 

On 6/16/2019 at 11:42 AM, PeterPan said:

It just varies. Doing APD evals is a specialized thing, so there are audiologists who have the booth and the tests and audiologists who don't. It's $$$$$$ to test privately and almost free at our local university. So if the university specializes in APD and has the tests and people, that can be a great way. Universities don't have a good track record on vision therapy and psych evals, but they seem to do pretty well with APD. Of course with dd they "passed" her by one point on the SCAN and said the lead APD professor would think they were crazy if they referred her for the full. They were right that on all the other aspects she actually tests within range. It's just background noise where she has the problem, and that was clinical and improved with the filter.

 I am pretty sure the Audiologist ran a test that used "background noise" during his testing last summer. She was extremely nice and explained each of the test and what she was looking for. I'll check the records to make sure. I can also ask the O.D. on Wednesday what caused her to recommend the APD eval. She knows he had a ear check with an Audiologist last summer so it could be just from that. 

As far as what I've decided to do for now is this. I talked with the VT office this morning. We are going to do 4 therapy sessions (2 this week and 2 next) before we head out on a nice long trip. Husband needs to be back in Aug for a work conference and we are going to stay around for a for months to finish up any VT needs, get the bottom 4 brackets on at the Ortho, my Echo and yearly Cardi check and decide if we want to keep or rent out our current "home base". This well give us time to see how we like work/schooling on the road. This also gives me 4 sessions to feel for how we like this VT offices and the homework to do on the road. I plan to test all 3 boys for Retained Reflexes of the next couple of days. The VT Office is just going to bill me for the first 4 sessions, the light therapy rental and the backpack of at home therapy items. This will allow me to submit the therapy bill to my Insurance to see if they'll cover it or not. 

Since we are not doing school this summer with middle son I think we can handle any retained reflex exercises and the VT homework. Of course, I may need to tweak that as we go. 🙂

[mrsfellman]

Some things I will add about this DS#2...he still sucks his pointer finger most nights. It's actually deep into the night not while he is falling asleep and goodness the suction is SO hard to break. 

He also started having "Night Terrors" very early in life. The first one was the day he turned 5 WEEKS old. It took me a minute or two to realize what was happening but I'd seen it before in my friend's daughter. She was older 2 yrs old but since I'd witnessed more than one of hers it helped clue me in on what is going on. Of course I talked right away with the Dr he was seeing and the subsitquent 2 different Dr's my son has seen over the years for a Pedi/Primary care. So far no one has been too concerned by them. I learned early that nap interruptions in the day, transition periods (i.e from 3 naps a day to 2) and being hot at night seem to trigger them. He still has them now and they are more intense but less frequent that when he was younger. 

[Storygirl]

Is the finger sucking son the one who is having orthodontics? DD13 sucked a finger, and it was causing an over jet. The orthodontist put an orthodontic crib in her mouth, so that she could not suck any more. It worked! You can ask the ortho, if he did not suggest it.

[PeterPan]

4 hours ago, mrsfellman said:

The VT Office is just going to bill me for the first 4 sessions

That's an interesting plan. 

3 hours ago, mrsfellman said:

DS#2...he still sucks his pointer finger most nights.

See what retained reflexes turn up. Besides the obvious orthodontic issues, it can reflect sensory seeking. I'm just pairing that with the night terrors. Any explanation on those like blood sugar dropping or anything? Have you tried a weighted blanket on him? For my ds, I just put it on to get him down. c. 

Suckling is all reflex, so it's very probable you've got retained reflexes going there. And I'm not discriminatory or something. I sucked my thumb till I was 10 (shhh), so it happens. But look at me now, pretty weird, lol. 

There's another list of reflexes beyond those on the PoP site. The PoP ones are your most common ones to hit. Some of the ones for suckling and rooting and nursing are in the hands. Babkin I think. You brush the hands and the reflexes will integrate.

https://www.brmtusa.com/the-babkin-reflex  snoop around here and see what strikes you. At one point I was just making it up because I couldn't find exercises and it worked. I used a nail brush, a really stiff bristle hair brush, several textures like that. there's also something you do touching fingers. Thumb to each finger, very slowly, then opposite directions, etc.

[kbutton]

Regarding retained reflexes and auditory processing...my son's main issue with auditory processing is that he can't take in speech at a typical rate (temporal processing). His defining feature that we noticed in real life used to be speech in noise--he was basically DEAF in any loud environment, or even just in the car from road noise! When some of his reflex issues were addressed in VT, we noticed that the most life-changing part of VT, for him, was that he could hear in noisy places. It might still be compromised a bit, but suddenly, he was "present" and could actually hear a lot of stuff.

Alternatively, it could be that his brain matured a ton all of the sudden--he was at an age where some of the auditory processing stuff starts to click, but I find it hard to believe that could explain such a HUGE change in just a few short weeks. Perhaps it was the combo of development plus VT. I don't know. It was definitely unexpected!

[mrsfellman]

12 hours ago, Storygirl said:

Is the finger sucking son the one who is having orthodontics? DD13 sucked a finger, and it was causing an over jet. The orthodontist put an orthodontic crib in her mouth, so that she could not suck any more. It worked! You can ask the ortho, if he did not suggest it.

Actually no that is my oldest son doing ortho intervention right now. But the finger sucker is destined to be at the ortho's next year. He just wants us to wait until he's at least 8 yrs old before he will eval us. 

[Storygirl]

43 minutes ago, mrsfellman said:

Actually no that is my oldest son doing ortho intervention right now. But the finger sucker is destined to be at the ortho's next year. He just wants us to wait until he's at least 8 yrs old before he will eval us. 

If you didn't tell him about the finger sucking, you might have a conversation about it. DD13 had the crib plus expander plus Herbst appliance simultaneously, and it was A LOT of metal in her mouth. If the crib could be done now, before the rest of it begins, it might be something to consider. It would have been much easier on DD to not do it all simultaneously. And the longer the finger sucking continues, the more it may affect the structure of the mouth and teeth. Dealing with it a year earlier has some benefits.

But I'm not a specialist, just a mom who watched my daughter go through it and wished that it could have been different for her.

[mrsfellman]

3 hours ago, Storygirl said:

If you didn't tell him about the finger sucking, you might have a conversation about it. DD13 had the crib plus expander plus Herbst appliance simultaneously, and it was A LOT of metal in her mouth. If the crib could be done now, before the rest of it begins, it might be something to consider. It would have been much easier on DD to not do it all simultaneously. And the longer the finger sucking continues, the more it may affect the structure of the mouth and teeth. Dealing with it a year earlier has some benefits.

But I'm not a specialist, just a mom who watched my daughter go through it and wished that it could have been different for her.

We have started using a finger guard at night. We did it for about a week and thought he was good. However, once I realized he was doing it again deep in the night a week or so back we have pulled it back out and will do it for a solid 2 months of nights again to see if that will help. Plus testing/treating for any retained reflexes. 

[mrsfellman]

I'm planning to start with these at home tests from here and see what I can notice and go from there.

https://www.retainedneonatalreflexes.com.au/test-at-hom/

 

[PeterPan]

You're going to need a few more. Moro is really foundational. Compare that list to the Pyramid of Potential or RMT Bloomberg lists and then youtube for more.