Behavioural optometry or Moorfields?

[skewiff]

Where shall I start, without this being too long winded?

Well, DS has cerebral palsy (v. mild) and had a glimpse of a squint a year ago. I wish I'd never taken him to the doctor about it, because it really was very unobvious. Even Moorfields could not see it when we went there, at first.

But a year on, after wearing + 2 glasses the squint is now really really strong.

The optometrist said today that she is not sure why DS is being made to wear the glasses, as he's still squinting with them on - but the doctor told us he was to wear them, last time, so he must continue ...

She said that he will always have this squint and never be able to see things in 3D or have good depth perception and that an operation will be inevitable unless the squint disappears on its own.

I can see that Moorfields is not going to be able to get rid of this squint - and am not sure what they are up to really.

Should I visit a behavioural optometrist or is DS too young (he's 3 1/2).

Should I just ditch the glasses and hope that he goes back to being OK as he was without them a year ago?

What would you do/ have you done?

I think you should at least get assesed by a behavioural optometrist, and then you'll be able to decide whether to follow their advice or not....

Agree with IB, though I believe BO can't be carried out on really young children. My own son had a minor squint, particularly noticable when tired, that was rectified with BO.

When my son had BO I read around the subject somewhat; there is significant conflict between Opthalomologists and Behavioural Optometrists regarding the treatment of squints and other eye disorders.

Opthalomologists on the whole disagree with BO and tend to think squints should be rectified with an operation, if necessary. BO's on the other hand believe the majority of squints occur due to weak eye muscles, which can be strengthened by the BO exercises. (Fighting for supremacy, funding, power etc).

I recall reading one example (on a BO related site) where one child had 3 operations to rectify a severe squint; all failed. Child had BO and the squint eventually sorted itself out.

Informative links
www.covd.org/
www.strabismus.org/strabismus_cure.html

May be worth seeing if the poster chipmonkey is about on the main board.

She is an optometrist who I believe does behavioural optometry and should also be able to give you some good advice.

Which main board do you mean nothereorthere?

Thank you for your advice everyone. I'll look into those sites Minx.

Sorry, Minx.

I have just looked at those sites that you suggested. They are about vision therapy, though, which does not sound the same as BO?

I thought BO was home based. This vision therapy sounds office based.

Do you mind me asking do you live in England and if so who was the BO you used?

Hi skewiff
BO often use VT (both home and office based) as part of their patient centred practice.

There is nothing to stop you seeking the opinion of a good paediatric optometrist or BO (except funds as BO is not usually through the NHS) in addition to taking the hospital advice before you decide which suits your childs needs better. 3.5 is not too young to seek a BO opinion although it is a bit young for some forms of VT.
Although I understand your frustration, it is unwise to just chuck the specs. 2.5 is a typical age for some types of squint (strabismus) to become more noticeable, but sounds like specs have not controlled as was presumably hoped. However taking specs away can make some types worse - only the eyecare professionals working with the child will know if this is a risk - so best to ask first.

ran out of space!! Sorry for the long post.
You asked what to do? (I am posting as a mum with a bit of eye knowledge.)

At the large eye hospital your son will have been examined by a range of professionals -including a paediatric ophthalmologist, orthoptist (expert in eye muscles)and paediatric optometrist all feeding into the final decision at the end of a long tiring day. Then there are long waits for follow up appointments and sometimes seeing completely different staff members. So it can feel a bit disjointed and confusing dispite the high powered staff!
A suitably competant local eye professional can get to know the child properly, assess the childs needs more as a whole and be a lot more accessable for quick queries and followup visits.
Is ds due a follow up soon?

I have a fairly severe, unstable squint, and have been through the gamut of treatments over the years.

The first line of orthoptist treatments, certainly for me, was all about doing exercises to strengthen the eye muscles, encourage binocular vision etc, and surgery and corrective lenses was very much the second line of approach - my squint was identified at 11, and my first surgery wasn't till I was 13, nearly 14.

IME, most optometrists understand very little about squint, and I would be careful about making decisions based on their opinions. If you are concerned, go back to them and ask them about the future.

Even though I have 10' of prism in my close work glasses, I have good depth perception, can see in 3D etc, in spite of being a squinting adult - this confuses most optometrists greatly

Magso, we are due a follow up in October - so not soon. We had our last appointment yesterday.

dibbler - do you mean regular (ie hospital optometrists) understand very little about squints.

If you do, I agree. I always come away sooo confused and am convinced now that its because they're confused too.

Magso - I think it will be better to get a local individual eye professional who we see continuously.

Thank you for your help.

Agree CMOT, squints (except the most straightfoward) usually need the expertise of a specialised team! IMHO the OP child (a squint that is still there) needs this - but there may be a place for seeing if there is competant local professional that could share the care and explain what is going on. I wish there was more communication between professionals!! My son (ASD) has a more straightforward squint (intermittant, not needing specs or surgery) and started under the hosptal, but now has regular checkups locally. It happens to be with a very competant pediatric optometrist/BO (who also works at a local hospital eye dept), but he would I am sure refer him straight back to the hospital if required- shared care. Ds was under a much smaller local hospital team.

Do you not see an orthoptist ? They are the squint specialists, so know much more than optometrists (hospital or community).

Unless you can find someone with a specialist interest in squint/binocular vision, then don't go down the local professional route. I've been doing this for 26 years now, and have only recently found someone who really understands it all - apart obv from when I was under an orthoptist and opthalmic surgeon - and I've seen a lot of opticians.

Theres a complex interaction of squint and short/long sighted correction too - so if your son needs vision correction in his glasses, it may make his squint more apparent

Yes orthoptists - but they usually work as part of a team be it hospital, eyeclinic or private clinic (with opthalmologist).

Skewiff (sorry my computor missed your update so cross posted -don't know how!)- did they not explain why the squint is still there? Perhaps a letter to hospital consultant asking your questions (or ask the gp to see his letter) would help? 3 months is quite soon for a followup but ages if you have not had it explained properly. (What are they hoping for. How are the glasses helping. Have there been any improvements etc.)
I think moorfields also provide services (with a 2 or 3 person regular team)in other clinics - so it might be worth asking if there is a suitable childrens eye service locally.

Magso,

It was not explained very well at all this time. But I think I was seeing a junior orthoptist.

She said that ds was still squinting with glasses on - not obvious when looking at him, but when she measured the non straightness as large.

She said he would never be able to see 3D, would always have the squint and possibly have an operation depending on how things develop. I don't think there have been any improvements (in my opinion its got much worse. when we first ever went it was occasional and now its there all the time)

She suggested that the glasses were not helping at all. Reading between the lines I think she was saying its not a refractory problem but a brain problem instead.

She said that the way our eyes develop is all mapped out and in our genes.

dibbler - what do you mean by "if your son needs vision correction in his glasses, it may make his squint more apparent" ?

This may explain why the squint seems worse ...

I'm not very good at explaining that bit, but the correction for being short sighted tends to make your eye turn out more. Weirdly, wearing contact lenses has less of an effect, due to there being less material - but I can't wear them for anything more than the odd, non driving occasion as they don't correct everything.

Squint isn't a refactory problem - it is to do more with muscle imbalances, or possibly a brain thing. Mine is probably as my sight in my left eye is so bad, my brain got bored of using it and decided to let it go, but no one knows.

As I say, I still squint, but it's corrected through my glasses, and although I have a bit of trouble with things like tennis balls which move in the air at speed, it's the only 3D problem I have - I can resolve everything else.

Not sure I can read between the lines either! What type of squint does you son have- eyes that turn in, out or is it worse in a particular direction? +2.00 specs would only directly help squints where the eyes turn in and then only if the squint was fully caused by an overworked focusing mechanism. It does not sound as if that is the type of squint your son has.
My son has an irregularity (incommitancy) where the squint is more obvious (and a larger angle) when he looks up and to the side. It became more obvious as he got bigger, although more recently he (now 10)has developed better coping mechanisms.
I suspect sticking with the specialist team for now might be best especially if they are watching the progress of the squint and making decisions for the future. BO seem to know more about eye coordination than the average optom but for a squint in a 3 year old that is getting more noticeable I agree with Dibler (IMHO) that an specialst team with orthoptist is better. Monitoring the angle of squint is important and that really is am orthoptists field.

I spoke to one of the team today (get confused with all their titles).

My son has an inward turning squint. It is mostly his left eye but also alternates.

My worry with staying with Moorfields is that even if they are able to monitor ds's squint getting worse, they say there is nothing that can be done about it. Basically the glasses are to reduce the level of the squint and the patch is just to strengthen up the left eye. They expect him always to have a squint. All they can do is manage it.

What frustrates me about this point of view and what makes me want to move to a BO is that from our now long experience (with my son having CP) there is no such thing as a fixed disability. We have seen with our own son and with others that all children have immense potential to change and progress.

I do not believe that this squint is here to stay and possibly get worse. That is why I am really keen on moving to a BO.