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Children's health

Convergent squint

40 replies

gnoomi · 07/04/2016 21:16

Hi, I'm hoping for some advice - my DD has been diagnosed with a convergent squint, we've been given eye patches (as of today, she has been happily wearing spectacles for about 6 weeks), but its sounds likely that my DD will also need surgery.

The main problem at this point is the eye patches - DD hates them. We know compliance is key to this being effective, and will be taking a zero tolerance (plus carrot) approach, but does anyone have any tips for making this easier? Our plan is a reward chart for each day (she has to do 2 hours a day), but also taking away screen time for not doing it.

The next is the eye drops needed for the eye checks: we've had them twice so far and each time has resulted in needing two of us to hold her down (to do it safely so that she doesn't hurt herself or us!) whilst the optometrist administers the drops. This is in spite of talking it through calmly in advance, lots of carrots offered and highly sympathetic and helpful optometrists. From what we can make out she'll be having this done pretty regularly (every 3 months or so), again, does anyone have any advice for helping with this?

DD is nearly 5 and is NT

Thanks

OP posts:
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ilovespinach · 08/04/2016 08:52

My son is 4 and has been wearing patches for about 2 years now. The first few months were really hard and we used many patches. I think the record was 10 in an hour. It gradually got better though and its not been a problem for ages... We used a lot of bribery. I bought a bag of small chocolate eggs. So he got one when he let me put the patch on and then one when I said we could take it off. Also tv....if he took the patch off, I turned the tv off....I have never shouted at him for taking his patch off.....it's hard at the beginning but with perseverance it does get better.

I've also made an event out of getting his eyes checked.....if he cooperates he gets a reward afterwards. He often picks up a car or magazine and says he got it for being a good boy at the eye doctor.

He will also need squint surgery..dreading that.

We've only had eye drops a couple of a couple of times. I think you've just got to hold them and do it as quickly as possible then cuddles after.

Hth

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Minisoksmakehardwork · 09/04/2016 18:24

My youngest dd has patches. We worked on her wearing them for a small amount of time and built it up to the 2 hours a day they wanted. I spoke at length with her opthomologist as she would scream/wail/flail. Anything to have non-effective patching time. I ended up cuddling her on my lap for 5 minutes, then built it up so she'd sit on my lap and watch a short cartoon, a longer one, wear it for so long (with a timer), until lunch time. Just so she had a good idea of the time of the 'nasty' patch coming to an end.

She's now just 4 and still hates wearing them. We use the adhesive ones as the soft ones which go over the lens she just takes off.

We did use a chart to start. But once she got bored of it, we dropped it. Although she knows we can always go back to it if she wants to see the reminder of how well she can do.

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vtpro · 13/04/2016 10:53

I really think you would all benefit from checking out the page Vision Therapy Parents Unite on FaceBook. There are many similar stories to yours and a heap of professionals ready to chip in and offer advice.
Ilovespinach - 2 years of patching - really??? There is a phenomenal amount of research out these days on patching and many of us are turning away from old ideas. Patching and surgery have relatively poor success rates. Check out PEDIG studies by searching google.

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hotandbothered24 · 13/04/2016 14:05

I am an orthoptist and whereas wouldn't normally join in a thread where you are asking for support from other parents need to challenge some of the comments from vtpro, yes the PEDIG studies are the best to look at in terms of the amount of patching to do and the relative success of patching versus atropine.
Patching does not have a poor success rate for the vast majority of children it improves vision very well providing it is worn and the problem is picked up early enough. Patching is to improve the vision only not to treat the squint. Similarly squint surgery does not have a poor success rate it depends on the type of squint being treated and if you are listed for surgery the relative success rate/ reoperation rate will be discussed with you

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vtpro · 13/04/2016 21:04

It very much depends on what you call success hotandbothered. I learnt from a traditional approach that taught that patching was the be all and end all. Amblyopia (lazy eye) is not a monocular problem, it is a binocular problem. Putting a patch on an eye for 2 years (as above) no matter what time of patching per day is limiting the possibility for binocularity further down the track. I still hear patients coming in saying that beyond the age of 7 or 8 it's too late to fix a lazy eye when the PEDIF studies have proven that to be incorrect. Strabismus surgery use visual acuity only as their success rate and give no mention of the binocular function of the eyes afterwards. My reason for posting was to make the original posters aware that there are alternatives to patching and surgery so they can make an informed decision. For me, working alongside some very open minded ophthalmologists and having seen so much success without surgery using non-surgical methods I now believe it is important to try or at the very least consider other alternatives first. Check out 'Fixing My Gaze' by Sue Barry.

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BlackSwan · 13/04/2016 22:22

I was told my son wouldn't have binocular vision - he had patching and surgery - imagine our surprise when we went to see an IMAX film and there he was trying to grab the images (fish) moving around on the screen. Worked for us.

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hotandbothered24 · 13/04/2016 22:51

Vtpro you are making inaccurate claims, visual acuity is not used as an indicator for success in squint surgery but it is about the alignment of the eyes and wherever possible to achieve binocular vision. I am fully aware of all the PEDIG studies and that amblyopia can be treated at a later age. I am an orthoptist and therefore understand fully about amblyopia, squint and binocular vision and am also fully aware that achieving binocular vision is not possible in some patients. I am open minded to other treatments but I have the knowledge to critically evaluate these which parents are not able to do. I have not criticised your viewpoint but challenged some of your statements, your latest post is defensive and I have read the book you mention but Sue Barry is an exception not the rule and to suggest otherwise is wrong

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vtpro · 13/04/2016 23:26

I don't think my last post was defensive at all. I welcome the debate and am happy to keep this civil and constructive. My reason for posting in the first instance is to make parents aware that alternatives exist. I have worked from both sides and I' also very well informed. I would urge parents to learn as much as they can before making a very important decision. I am all for collaboration between professions and have experienced the benefits this can give. One of the best examples of collaboration I can find comes from America - I'll try to post a link but I'm not sure I'm allowed to
covdblog.wordpress.com/2015/01/27/collaboration-between-developmental-optometry-and-pediatric-ophthalmology/
I believe that the treatment of amblyopia and strabismus is about to undergo a revolution after being stuck in the dark ages for over a century.

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VTrocks · 14/04/2016 00:00

Here's my sons story.

My son at age 22 mos. had strabismus plus strabismus corrective surgery which made his vision worse. After surgery he was developmentally delayed with many issues. This gave My son a mis-dx with moderate autism pdd-nos, we were told at age 5 that he would not b a productive member of society, he would live with us the rest of our lives, and get a special needs trust. I was devastated to say the least! We found a great OT who figured out he needed vision therapy. Within 4-6 weeks we were seeing tremendous changes in him. No more lining up cars/items, no more repeating questions over n over again, his handwriting improved, speech improved, coordination improved, running, riding a bike, he could finally put Legos together, bathroom issues got better, reading improved, and more. 4 yrs later and after 3 yrs of vt he is thriving in the classroom, needs minimal assistance and the sky's the limit. He is now dxd with Aspergers. He is still working on the last part of attaining his 3D vision. He's come such a long way. So very proud of him ❤️❤️❤️❤️

His dxs by the VTOD were strabismus, amblyopia, esotropia, exotropia, no peripheral vision, no depth persecution, no spatial awareness, no stereopsis, no 3D. He was seeing double with a head tilt bc the surgery just cosmetically aligned his eyes. Most POs do not know a thing about vision only 20/20 sight acuity far vision -snellen chart 😔

www.facebook.com/pages/Joshuas-Journey/271053699695369

My son has been going for 5 yrs total including 2 very much needed breaks. Because the damage had already been done, vt has taken so much longer. If I had been informed about vt prior to surgery I would have gone that route.

Most POs tell people there is a cut off age for surgery like ours did bc most of the time it is used as a scare tactic. 😡😔.

Knowing what I know now, I ask myself why did the PO tell me my child would go blind in one eye of we didn't do surgery by age 2? Why couldn't the PO tell me my child was seeing double after surgery? Why couldn't the PO tell me he had amblyopia? Why couldn't he tell me Joshua had Esotropia, Exotropia, no binocular vision, no depth perception, no peripheral vision, no spatial awareness, no stereopsis and no 3D?

These questions have boggled my mind for 9 yrs now. I know now why he couldn't tell me why? POs are surgeons. They do not have training with vision n these issues bc they are functional issues, meaning the body has to function properly so that all 15 visual processing skills are used to their fullest potential. Vision is the key element it's processing the information one takes in to make sense out of what it's seeing to tell the brain.

So POs see eyes as a mechanical/structural issue. They fix it by cutting muscles. Granted some surgeries are warranted however, my question is if you or your child have had surgery, and u go back to a PO, how does a PO test for binocular, depth perception, peripheral vision, spatial awareness, stereopsis and 3D? Obviously my sons PO had not a clue about these very important life skills that are acquired through brain/eye coordination.

These are very good points to ponder bc a Good VTOD will perform tests and tell u everything about how your child sees.

How many parents would ask or challenge a PO on those questions above? They have no measures in place to tell u bc they are not kept up to date on these issues bc VISION is not their specialty. Eyesight 20/20 acuity far distance is. They also cannot tell you how one is processing information.

The end result of a report by a PO n a VTOD are totally different.

I m only giving insight here and information for thought. If your child has surgery and begins to show signs of poor development, unexplained behaviors i.e., headaches, dizziness, can't read for long periods of time, needs frequent breaks, can't stay on task at hand,, does poorly in school not just in reading but in math, science and comprehension n can't follow directions please get a full comprehensive eye exam.

There are many reasons why folks say surgery works or doesn't work and reasons why people say vt works and it doesn't. I just know now that my child's vision, development and behaviors are on better track now then before.

So sorry for this "rant" but some good points are made and I inform others of options that they would most likely know nothing about.

In the end, we all choose what we feel is best. As they say knowledge is powerful n it can't be taken Away.

VT is very expensive and so worth the investment. So many questions to ask a VTOD before starting a vt program too.

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hotandbothered24 · 14/04/2016 00:31

vtpro, the use of emotive language about "treatment from the dark ages" and your suggestion that I do not understand what I am talking about is defensive. There is a role for visual exercises/therapy in some circumstances but please do not dismiss evidence based treatments that are also proven to work. Any form of amblyopia therapy be it patching/atropine/optical penalisation or computer based therapies involves penalising the other eye by some means, during treatment, parents want the best for their child and I would always fully inform them of different options for treatment and also advise them of what treatments are not likely to be effective for their child. Visual development is so complex and there is a plethora of information out there so it is no wonder that people pick up incorrect information. I accept that there is also good and bad practice in all areas of eye care , I have chosen not to criticise vision therapy/behavioural optometry in response to your posts but have challenged some of the things you have said which are not backed up by evidence.

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VTrocks · 14/04/2016 01:25

Here's my sons story.

My son at age 22 mos. had strabismus plus strabismus corrective surgery which made his vision worse. After surgery he was developmentally delayed with many issues. This gave My son a mis-dx with moderate autism pdd-nos, we were told at age 5 that he would not b a productive member of society, he would live with us the rest of our lives, and get a special needs trust. I was devastated to say the least! We found a great OT who figured out he needed vision therapy. Within 4-6 weeks we were seeing tremendous changes in him. No more lining up cars/items, no more repeating questions over n over again, his handwriting improved, speech improved, coordination improved, running, riding a bike, he could finally put Legos together, bathroom issues got better, reading improved, and more. 4 yrs later and after 3 yrs of vt he is thriving in the classroom, needs minimal assistance and the sky's the limit. He is now dxd with Aspergers. He is still working on the last part of attaining his 3D vision. He's come such a long way. So very proud of him ❤️❤️❤️❤️

His dxs by the VTOD were strabismus, amblyopia, esotropia, exotropia, no peripheral vision, no depth persecution, no spatial awareness, no stereopsis, no 3D. He was seeing double with a head tilt bc the surgery just cosmetically aligned his eyes. Most POs do not know a thing about vision only 20/20 sight acuity far vision -snellen chart 😔

www.facebook.com/pages/Joshuas-Journey/271053699695369

My son has been going for 5 yrs total including 2 very much needed breaks. Because the damage had already been done, vt has taken so much longer. If I had been informed about vt prior to surgery I would have gone that route.

Most POs tell people there is a cut off age for surgery like ours did bc most of the time it is used as a scare tactic. 😡😔

Knowing what I know now, I ask myself why did the PO tell me my child would go blind in one eye of we didn't do surgery by age 2? Why couldn't the PO tell me my child was seeing double after surgery? Why couldn't the PO tell me he had amblyopia? Why couldn't he tell me Joshua had Esotropia, Exotropia, no binocular vision, no depth perception, no peripheral vision, no spatial awareness, no stereopsis and no 3D?

These questions have boggled my mind for 9 yrs now. I know now why he couldn't tell me why? POs are surgeons. They do not have training with vision n these issues bc they are functional issues, meaning the body has to function properly so that all 15 visual processing skills are used to their fullest potential. Vision is the key element it's processing the information one takes in to make sense out of what it's seeing to tell the brain.

So POs see eyes as a mechanical/structural issue. They fix it by cutting muscles. Granted some surgeries are warranted however, my question is if you or your child have had surgery, and u go back to a PO, how does a PO test for binocular, depth perception, peripheral vision, spatial awareness, stereopsis and 3D? Obviously my sons PO had not a clue about these very important life skills that are acquired through brain/eye coordination.

These are very good points to ponder bc a Good VTOD will perform tests and tell u everything about how your child sees.

How many parents would ask or challenge a PO on those questions above? They have no measures in place to tell u bc they are not kept up to date on these issues bc VISION is not their specialty. Eyesight 20/20 acuity far distance is. They also cannot tell you how one is processing information.

The end result of a report by a PO n a VTOD are totally different.

I m only giving insight here and information for thought. If your child has surgery and begins to show signs of poor development, unexplained behaviors i.e., headaches, dizziness, can't read for long periods of time, needs frequent breaks, can't stay on task at hand,, does poorly in school not just in reading but in math, science and comprehension n can't follow directions please get a full comprehensive eye exam.

There are many reasons why folks say surgery works or doesn't work and reasons why people say vt works and it doesn't. I just know now that my child's vision, development and behaviors are on better track now then before.

So sorry for this "rant" but some good points are made and I inform others of options that they would most likely know nothing about.

In the end, we all choose what we feel is best. As they say knowledge is powerful n it can't be taken Away.

VT is very expensive and so worth the investment. So many questions to ask a VTOD before starting a vt program too.

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vtpro · 14/04/2016 01:37

Wow, and I'm the defensive one? I am extremely evidence based in my approach and if my postings have stirred debate then I'm happy. It's important parents are given as much information before making a decision and I feel that doesn't happen in the UK. Not by a long way.

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vtpro · 14/04/2016 01:39

Sorry, that message was in response to hotandbothered

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VTrocks · 14/04/2016 02:05

Everyone needs to be informed of their options no matter what.

Evidence based is for the birds in my eyes. If I would have listened to the PO and 9 other professionals who said don't do vision therapy, it's a scam they will just take your money or listened when the PO said he will grow out of it my son would not have the quality of life he has today.

I say try it if it doesn't work it doesn't work but at least u have tried. We all want the best for our loved ones. And never ever take NO for an answer.

I was just in the UK last week as a keynote speaker bringing vision therapy to light over there because every human on this planet has to decide for themselves what they want with all the information they have.

Drs are supposed to take an oath to help people not make them worse or not help them get better.

Just please be open minded that there are other options besides surgery that do work. Some require therapy then surgery then more therapy and others require surgery and then therapy or therapy and surgery but both professions need to come together to refer patients to each other. This should not be about what profession or school of thought is better it's ALL about the PATIENT!!!!

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hotandbothered24 · 14/04/2016 23:01

VTrocks, I'm glad your son has done so well with vision therapy but there are still a lot of misunderstandings in your post. All the tests you are talking about in terms of assessing binocular vision can be done by orthoptists. Surgery for squint is never to restore vision or prevent vision loss it is about realigning the eyes and if possible to allow the eyes to work together. You are clearly very disillusioned with your care by the hospital eye team but from the other side we see so many parents who have been promised things vision therapy cannot deliver and been given information by vision therapists that is simply not true. I have not said that vision therapy does not have a role but both your post and posts by VTpro are very damning of non vision therapy techniques and show a lack of understanding of the knowledge and roles of different members of the eye team.

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vtpro · 15/04/2016 00:09

Not true. I work in a hospital environment with an incredible team who are at the forefront of their profession! I have nothing but respect for the team I work with, including the orthoptist and paediatric ophthalmologists. They are amazing and the rare open minded. My intention here was to make the posters aware that they have options. If you have examples of patients being given information that's not true I obviously can't comment on that and that is not acceptable. I hear time and time again that patients feel they haven't been informed of options and didn't realise they were other options. That's my last dialogue with you hotandbothered.

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VTrocks · 15/04/2016 01:40

I have to say that you have danced around the questions I presented. If an orthoptist or Opthamologist can test all of these issues why are so many people in the dark about their child's well being after surgeries or having gone to an orthoptist or opthamoligts for years with the same old answers and then when someone brings up a new approach and hears and sees for themselves they are extremely irritated and angered.

I do believe and IMHO orthoptists and Opthamologists are scared of learning and knowing more about the eyes. They believe they know it all. They may know it from a medical standpoint but definitely not from a functional standpoint.

Vision therapy is NOT going away if I have anything to do with it. So many citizens of other countries are begging and pleading for vision therapy in their country and it will be one day!

There is a whole other world to explore in vision therapy besides vision therapy itself.

I wish u the best of luck in your profession and having an open mind is so much healthier.

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hotandbothered24 · 15/04/2016 07:04

VTrocks be specific about what questions you want answered as your original post was telling your son's story not asking questions and I will answer them . Again you have very much gone on the attack which I am trying not to do . I am certainly not scared of new ideas but will be able to evaluate them coming from a background of understanding the visual system, visual development and binocular vision. At no time have I dismissed vision therapy completely but I understand what it can deliver and what it can't

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Emochild · 15/04/2016 07:25

VTrocks

I went to see a vision therapist aged 28 and was told that they could restore my 3D vision, depth perception and peripheral vision after a very expensive course of therapy

I had my first squint op at 6 months as my eye turned out so much it was essentially useless

I had a 2nd op at 15 months then a further 3 before I was 7

I don't believe that VT could have done any of the things they claimed and would have been an expensive pursuit which would have delayed me going back for further surgery
Yes the surgery at 28 was cosmetic rather than functional but the impact of a squint on a person's self-esteem is often underestimated

The OP came on here asking for support on how to get her child to wear a patch -she did not ask if there were other treatment options available
It's unfair to derail a thread in this way

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Crusoe · 15/04/2016 07:47

What sort of patches do you have? You can get nice ones with glittery pictures that come with a picture chart. You add each day's worn patch to the chart to build up a bigger picture, helps with motivation.
My son used to use the iPad when wearing his patch which also helped with the motivation. I just used to try and keep him busy while patch wearing to keep his mind off it. I also explained why he needed it and how it was helping him. If my lovely but very difficult ADHD & attachment disordered boy can do I honestly think any child can but it does take some getting used to.
The results were really good for my son so worth persevering with.

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hotandbothered24 · 15/04/2016 08:21

VTPro we can all quote many examples of where patients believe they haven't been told something by another professional which turns out not to be correct, I work in a department where some of our patients do have vision therapy along side their care with us and we are fully in support of this. I just really object to you making sweeping statements about my profession and inaccurate remarks about other forms of treatment which may mislead parents, not all orthoptists are equal neither are all vision therapists and I don't want to get into mudslinging as you appear to have done. Emochild is right you have hijacked a thread from a parent asking for help from other parent about encouraging their child to wear a patch and I didn't want to leave your posts unchallenged. If you want a debate about vision therapy start your own thread

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RapidlyOscillating · 15/04/2016 08:47

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RapidlyOscillating · 15/04/2016 08:52

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bayworld · 15/04/2016 12:01

First time poster after stumbling across this thread and not sure I should get involved but, hey, here goes. I'm an Optometrist with a foot in both camps. I work in private practice and do sessional work in a hospital though I don't live in the UK.

To the opening poster: I agree it's a really tricky one and believe me keeping a patch on a child is one of the trickiest things we can try when the child is not interested. Do try to remember that it is a lovely human being you are dealing with who is probably really worried about what's going on and may not be old enough to understand. Nevertheless, all needs to be done to try to improve the eyesight. Have the optometrists/orthoptists mentioned other options if the patching simply doesn't work?

To hotandbothered and vtpro: we all have a lot to learn from each other and we are in really exciting times as we learn more about amblyopia and strabismus through the Pedig studies. Who would have believed that we'd be trying to improve amblyopes in their mid-teens with the possibility that this age may be further expanded? I can see both sides of the story here, I've truly seen some remarkable things with vision therapy but have found full patching a necessary part of the management in many cases. Let's learn off each other and maybe you guys call a truce?! The people that matter the most are the young ones we see every day.

I'm constantly challenging myself to attend as many conferences as possible in this area and it seems that the difference between the differing views can be considered as vision therapy being a more holistic approach whereas the orthoptic model is more traditional. We have some robust (but friendly) conversations at the hospital clinics I work in and, indeed, a most recent one has been about the subject of patching. The vision therapy approach suggests that by putting a patch over an eye we are reducing the chances of binocularity in the long term though we still can get some good results. Sometimes though patching is simply the only thing that seems to bring the acuity up. On the other hand, again, vision therapy would respond by saying that acuity is not the only thing we should be concerning ourselves with and, if you increase the foundation of binocularity and then attempt to improve acuity, you are more likely to get longer lasting results. We have also had an excellent debate about what a child should do when the patch is on. No longer do we advise just sitting down and reading a book or watching TV as best practice. I guess these are things we need answers to in the years to come with solid studies.

I would say though that the ophthalmologists I work with will only consider surgery as a last resort. I also believe this is becoming more accepted practice.

Back to the opening poster. I was going to make a few comments about the screen time you mention but I'll hold fire. If your interested in my views on that one I'm more than happy to share them!

To emochild, if you were promised what you say you were then that's not on. There's no place for a professional like that in any profession. Fortunately they are few and far between.

Best of luck with your efforts gnoomi!

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hotandbothered24 · 15/04/2016 12:12

bayworld , a well written post and balanced post. I think you will find if you read my posts carefully is that I have at no point dismissed vision therapy but have simply challenged misinformation from another poster. Our patients deserve the best care and I work in a large eye hospital where we have a very close and positive working relationship with our optometry colleagues and we continue to learn from each other

I will leave it there

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