Divergent squint and visual processing difficulties

[oodlesofdoodles]

DS 5 has a divergent squint which seems to be correcting itself. However he has poor depth perception, for instance he can't tell the difference between stickers/flaps and printed pictures in sticker/lift the flap books. In a messy room he cannot pick out an object.

He's been to opticians about a year ago and apparently isn't short or long sighted. How do I get his eyesight properly assessed? What can we do to improve his eyesight?

Sorry if this sounds pathetic. DS has lots of small problems which all add up. I'm trying to unravel them.

Thank you Indigo x

TOTU - DSs nystagmus was caused by his 3 month vaccination. Started literally straight after it. It was only severe for about 2 weeks though, and then it became intermittent.

Tumble - I don't know anything about squints, and I have not said anything on this thread about how to help squints, who to see or what to do. Everything I've said has been about visual perception and convergence insiffuciency.

skewiff is already going to Moorfields, so surely she is already under the best professionals.

Everyone on this board is already under a handful of professionals. The problem is always getting those professionals to do anything.

DS was under Dr Calver at St Guys, one of the world experts in nystagmus (when DS was a baby/toddler, before Dr Calver retired).

The brain controls everything. The cerebellum controls movements of the body, and therefore controls movements of the eyes. The cerebellum does not control vision or visual perception. I assume squints are a problem with movement of the eye, but I haven't researched it.

Tumble - you're an opthamologist. What do you recommend Oodles and Skewiff and EJ do?

Sometimes there is nothing to do, nothing which can be done.

Albinism often causes nystagmus, nothing can be done to cure nystagmus, things can be done to learn to cope with it. It can change however.

squint does not mean a child will suffer due to a lack of binocularity, people with squints can manage fine with ball games, driving a car, crossing the road, it generally doesnt matter. In adults who develop a squint it is different because they get double vision. children with squints do not have visual perception difficulties per say, the two are not linked at all.

In children treatment centres around attaining visual acuity, patching , atropine etc , glasses. Then the cosmetic appearance of any squint can be considered. No "therapy" that a Bo can offer will take a squint or nystagmus away.

Convergence insufficiency is differnent, you cannot treat a child with a squint for this, its impossible. On failure of convergence the eyes will point in differnt directions, but this is not referred to as a squint.

Sometimes children learn coping mechanisms, or appear to improve, some of these therapies involve improving concentration that is all. If it helps a child fine.

However squints can be serious, they can be caused by very serious conditions.

tumble - I know you're just quoting everything you've learnt, and all of your professional experience.

But I too am quoting from my experience. I know DSs nystagmus has improved. So telling me it can't be improved by therapy is nonsense. I also know you don't know anything about the therapy we've done, so you can't possibly know if it'll work or not.

TH does say he always has success at improving convergence insufficiency. However in kids with squints, the success may not be a full cure (but still be an improvement - and sometimes he does make a full cure), whereas for every other child it is.

All 3 of my kids vision has been improved by TH. I can't speak for any of the other kids he treats. And I can't speak for any kids who have squints.

And my kids have definitely improved, not just 'appeared to improve'. I have loads of hard data to back that up.

And it's definitely not just their concentration that's improved. Nor their concentration that's been worked on.

And Tinsley House is not a Behaviour Optometrist.

tumble8, wouldnt it also be true to say that a child who has other movement difficulties (e.g. dyspraxia) would also have difficulty with refining movements of their eyes. Or that a child who has difficulty with bilateral integration or crossing the midline would show the same difficulties with their eye musculature?

Some children who present with visual perceptual difficulties have been assessed by an optician or orthoptist as having perfect 'vision' but it's not functional IYKWIM

IndigoBell and Tumble. I've been lead to believe that having nystagmus from birth and having 'acquired' nystagmus later can mean the child responds differently to available therapies.

Is this correct?

TOTo, hello acquired nystagmus is very serious and is alwyas caused by serious things going on in the brain. Usually in these cases the emhasis is on preserving life. Vision will generally not be affected by the nystagmus.

Indigo with all due respect the evidence you have is provided for you by a company or an individual who 1) charge a huge amount of money 2) are unqualified to do what they do 3) arnt going to tell you your child hasnt improved after youve paid them £800.

Improving vergences, ductions and convergence is the bread and butter of orthoptists, who have a degree in those skills, and arnt making money out of you.

Again I must emphasise anyone who has told you they can improve squint with CI exercises knows very little what they are talking about.

Functional vision simply means that, how you use vision in day to day life.
Nystagmus cannot be improved with these therapies, but children can learn to cope with it.

what sort of nystagmus does your child have INDIGO?

Hello - what is the stairs exercise, and what does it help with specifically??

DS1 developed nystagmus, and lost his vision, the day of his 3 month vaccination. So I guess you would call that acquired.

Everyone was very worried about him.

Over the next few months his vision gradually came back, and his nystagmus settled down to be far less noticeable. (At the beginning his eyes were moving back and forth 100% of the time)

Before we went to TH he would intermetantly get wobbly eyes, several times a day, and it would last for a few seconds up to about a minute. During that time he would lose his vision. ( He described it 'like a screen saver came down in front of his eyes' )

As well as that every time he did an eye test you could see his nystagmus. ie he didn't have full movement of his eyes, but it's not something you would notice unless you asked him to look right or follow a pencil etc.

I haven't seen his eyes wobble now for a while, and they used to wobble most nights when he had a bath. I'm waiting to go back to TH to see what his eyes are like in the vision test.

His nystagmus is also very noticable when trying to follow a moving object.

When the paed and OT referred us to the orthoptist I was very hopeful they'd help him. But they had no interest at all in helping him. All they wanted to do was see us again in 6 months, and again in 6 months.

I don't know if this was just bad luck or if this is representative of orthoptists in the NHS. I'm certainly prepared to accept that an orthoptist could have helped him, but they didn't.

I've spent less than £800 at TH for each child, and they haven't told me my child has improved. It's the opposite, I'm telling them all the improvements I've noticed, and all the improvements school have noticed.

I've also seen the results of computer tests tho test his vergences and pursuits etc, where I've seen the numbers go in the right direction. But even without that hard data there is absolutely no doubt that all 3 of my kids are now reading better (only 1 of them has any kind of dyslexia), and are better at ball sports (both because they're more co-ordinated and because their vision is better)

DS1 is 11 and very articulate. He is the one who is telling me he can now play football because he can now see the ball coming better. Nobody put those words in his mouth - I didn't even know he was playing football.

Both DS1s and DDs teacher telling me how much they've improved is a pretty huge co-incidence, when they didn't even know the kids were doing therapy. Of course DDs reading age going up by over 2 years is also a pretty huge clue that her vision has improved.

I can see that DS1s nystagmus has improved. And he knows it's improved.

His nystagmus may well not be normal or typical. It was diagnosed by Dr Calver, and noticed in every single eye exam he's had since he was 3 months.

Tumble - if the NHS was better, we wouldn't need to go to therapists. Nobody is crosser than me that so many kids are getting failed by the NHS. But luckily I have the money to go to a therapist. Luckily I have the money to help my kids.

And luckily I didn't listen to all the helpful professionals who told me nothing could be done.

MrsB - the stairs exercises is described in <a class="break-all" href="//"http://www.amazon.co.uk/gp/product/0753512955/ref=as_li_ss_tl?ie=UTF8&tag=agilecoach-21&linkCode=as2&camp=1634&creative=19450&creativeASIN=0753512955" rel="nofollow" target="_blank">the brain food plan

It's part of the TH neuro-development therapy, and it improves the cerebellum. 98% of kids with ASD/ADHD/Dyspraxia/Dyselxia etc have an underdeveloped left cerebellum and an underdeveloped right pre-frontal cortex. (The other 2% have right cerebellum and left pre-frontal cortex problems...)

The cerebellum controls the body, (gross motor skills, vestibular system, knowing where you are in space, eye movements etc), and the pre-frontal cortex controls social and emotional stuff.

The stairs exercise is totally safe for anyone to do, and will help most children. Even if they don't have any SN.

It's part of stage 1 of the TH therapy.

After you've been following stage 1 for at least 2 months, TH then prescribes vision therapy if your child needs it. Only 60% of the children TH sees need vision therapy.

Thanks x

Okay so to be clear the issues I should be asking any practitioner (nhs or private) about are:
Depth perception
Convergence
Tracking
Is there anything else?

Tumble, thanks for your comments. The big problem I have with NHS practitioners is that they each have their area of expertise, but just cannot see the big picture of how all these seemingly small issues (visual processing, poor balance, lack of core strength, illness as an infant) all add up to a moderate learning and communication difficulty.

oodles, yes I completly see what you mean.

If people are in Scotland, you can as I understand it be referred to Nadia Northway at Glasgow Caledonian University who is the leading expert in Scotland in the field of visual percpetion, tracking, reading difficultied and eyes etc.

You wont be paying £800 to tell your child to go up and down some stairs.
She knows her stuff

OP

If I hadnt done RRT, AIT and now going to TH with my son (8.5 and severe dyslexia and asd) he would still be finding even the most simple self care tasks too hard. His diet would still be very limited and he would still be badly constipated. He would still be making no/little academic progress at school. He would still be hypersensitive to loud noise, he would still have the moro reflex and huge levels of anxiety. (Robin was the only professional in 8 years to tell me why my son tip toe walks for example...)

Luckily, I DID do/am doing these things and ds1 is improving every day....he has gone up 4 reading levels in 2 weeks for example.

Thats all I know and all I need to know.

The NHS will not fail my son anymore....in my sons 8 years I have met with plain negliegence (we are lucky ds is here at all, frankly) down to complete indifference...I am sure many parents on this board have had the same (or worse) experiences. THAT is why we got to "these people"!

HTH clarify things for you tumble

oh and tumble I am an sahm (of only average intelligence I assure you!) and I could tell my son had major tracking issues 3 years ago!!! His optician says his vision is 20/20 - great! - but has also told me there is "no problem" with his tracking (by doing a 30 second test )

Despite there being "no problem" with his tracking, when he reads a book, he gets to the middle of the sentance, his eyes start to wobble and he loses his place/starts reading the line underneath/the next word but backwards etc etc

But, as I say, I am no expert. Just a mother who has been reading with her child for over 5 years and has a pretty good idea of his strengths and weaknesses, but what would I know??

Sigh.

thats good Becaroo Im glad your son has improved. Wonderful, so good to hear.

Im a firm believer in mums instinct.

best of luck for the future

Some of these differences of opinion seem to me to be semantics. It feels as though people are using the same word (eg tracking) to refer to similar, but subtly different things. Maybe we could describe the actual features instead?

It reminds me of my pet hate, food 'allergies' which are actually sensitivities NOT ALLERGIES. Or even difficulties in digesting large amounts of something. So, a child is allergic to peanuts (epipen), sensitive to gluten (coeliac) and fine with dairy proteins but gets wind with milk (lactose intolerance).

I agree, I think people are picking up phrases from people they have seen who are unqualified and then getting the wrong end of the stick.

phrases like functional vision, tracking visual perception, convergence insufficiency

The problem I used to have with my 'allergy' to the phrase 'food allergies', was that it stopped me properly understanding the genuine issues. Being painfully bunged up for 3 days by a tiny petit filous is a big problem. Whether or not it's a true allergy, in the scientific sense, is far less relevant. And I must have seemed horribly smug and unsympathetic .

No, Maria. I do know what all these terms mean. When my child gets diagnosed with a problem, I do look up every word in the report till I understand it

My children were diagnosed by 'qualified professionals'. It's only treatment I've had to search for elsewhere. And I've only done that because the NHS has continually let me down.

Maria, what's happening here is that an NHS professional:

A) thinks she knows it all
B) is refusing to listen to parents
C) refusing to consider evidence that doesn't match with her own beliefs.

All pretty representative of the 'service' I've received so far from the NHS.

This wouldn't matter so much - except that Tumble runs an eye clinic for children with reading difficulties :(

Its a tad unfair to get so personal, when we are all here with a common goal to help others, correct?

It is one thing knowing the meaning of the words in a report its another having the background knowledge, training, and experience to go with it.

I certainly dont profess to know it all, know one does of course know it all, wouldnt that be lovely. This is why we do not know all the answers for helping these childeren, all is not understood about the brain.

I KNOW SOME of these " treatments" talked about are utter nonsense but not all of them. I know this because I know my anatomy inside out . I know one of the people spoken about on here, whom people have taken their child to is in a lot of cases talking about rubbish and charging people a huge amount of money, but worse than that is giving them false hope.

I am concerned about people who are taken in by the advice of unqualified people , something they do through understandable desperation to help their child. The FACT is that some of these people are dangerous. End of.

Indigo, I'm not suggesting you don't know what the various terms mean. I'm saying that I suspect that, beyond the definition, the way a paediatric eye surgeon uses them may differ slightly from the way a behavioural optometrist does. And a psychologist researching the development of normal visual perception might also have a shorthand use.

As an imperfect analogy, a private nutritionist might well formally report all the examples I gave as allergy. An NHS allergy specialist would ignore all bar the peanut one. A dietician or GP would hopefully listen to the story, avoid arguing about the various definitions of allergy and advise the mum to continue avoiding foods which make the child ill. Theres a stereotype of alternative practitioners to be deluded fools, greedy quacks, or hopelessly unscientific. And in fairness, there are some dodgy folk about.

I know very little about visual problems in children (though a bit more now after spending much of this evening googling!). It looks to me as though good tracking to babo means near-perfect use of the eyes to efficiently follow text and balls etc. Whereas to tumble it might perhaps mean that the child has no obvious defect in following an object during a routine clinic examination.

DS was diagnosed with CP at 6 months - most NHS professionals have said nothing can be done to improve his condition - or they have not bothered to say this, but just offered no help/good advice. They just 'manage' his condition. From meeting many parents of children with CP this seems to be a very common experience.

We have, as a result, pursued a variety of different private therapies - nearly all of which have had a profound effect in improving DS's condition. He is now a very able, confident little boy with a completely different prognosis than he started out with.

Because of the changes we have seen in DS, physically, I refuse to believe/accept negative 'nothing can be done' statements from eye professionals.

Moorfields, like Tumble, insist that nothing can be improved upon or changed with DS's squint. That it must just be managed (an echo of all the advice we have been given on his physical abilities over the years).

I believe that the NHS is only able to 'manage' its patients - there is such an overload - it cannot afford to offer real hope of change to anybody. I have been told that the NHS refuses to condone therapies that do work, so that it does not have to fund/offer these therapies.

We were seeing a behavioural optometrist for a bit who previously worked at Moorfields. She had been trained in the conventional way, but then decided to look further afield and read other theories and possibilities with her work.

I don't know you Tumble and do not want to offend. But you remind me of the many NHS people we've met along the way who stick to the text books they've been trained on. Why does the whole truth have to be soley in these text books?