UK Keratoconus Self-Help and Support Association

Well, here goes the paranoid mother in me.

My little boy has just started to rub his eyes. Now he is well aware that I have a problem and has taken to that really well and also just recently we have found out he has a 'squint' in both eyes which the hospital think may only be correctable by surgery.

This obviously came as quite a shock as he had previously been for eye tests again probably due to my paranoia and nothing had been picked up until the start of this year. Basically at that point we were advised that surgery may well be needed however it's only down side was it was likely to be needed to be repeated several times throughout his life and could only be done 4 times I seem to recall they felt, well at 8 years old I thought this was a little drastic.
Anyway he was desperate for glasses and whilst it was felt they may not help fully correct the squints the consultant suggested it was worth a try.
He has had them now for 3 months or so and at last check up things seemed a little better so we are back again at the hospital later in the month.
A week or so there was a bit of an accident in the playground and my little one ended up at the bottom of the pile of footballers with his glasses being squashed to his face redulting in a nice cut and bruised black eye, well he is a boy.

Anyway to get to the point now the rubbing seems to be starting and whilst I have asked him not to I don't want to frighten him to death and also feel sometime he is not aware he is doing it.

Any ideas???

I suppose there is no concrete evidence that the KC would be passed onto him however we only found out that my husband (now 33)had the same type of squint 3 weeks ago.
At which point the optician told him ' you do realise there is a 75% chance you could pass this onto your children' to which he replied 'yes, we found that out at the start of the year'

Is this just my paranoia or should I be concerned?

As another point my father who is now 78 has rubbed his eyes every mornng for as long as I can remember and often finds it the only way he wakes up properly, he however, has no KC (or that has been diagnosed) and only started with glasses once he was nearing retirement for reading and then later driving.

Susan

Hi Susan

I have a very pronounced squint because of a birth defect. I have never had it corrected because the amount my eyes turn in varies throughout the day and the surgeons can't garnantee that they will be able to fix me properly.

I had to put up with all sorts as a child - I got called 'clarence', after the cross eyed lion, 'googley eyes' and worse. Now because of the KC i wear dark glasses so it isn't so much of a problem but I used to find just having a squint would leave people feeling awkward and unable to engage properly because they didn't feel they could make eye contact. I remember one woman trying desperately to make eye contact by coninuiously moving her head and bending her knees to try and engage but she gave up in the end and spoke to me without looking at me.....

If I had the oppurtunity now and my squint was correctable I would have it done.

Hope this is of some comfort.

Drew

Hi Susan

I guess what Id ask is have the specialist done a Topography? Even a slight sign of KC can be picked up with a Topography....although initially it may just show as Astigmatism.

But bearing in mind that KC is more prevalant and begin at the start of teens when measured across the board of KC patients.....

On the other hand, it may be just a change of weather conditions and season causing him to rub his eyes?.......

J

Hi Susan,

I'd use your father as a calming factor - if he's been rubbing his eyes and has no problems, there's every reason to believe that your son could be similar.

It's also worth remembering that no causal link between eye rubbing and KC has ever been proved.

Hi Susan,

My daughter has always rubbed her eyes and we were told when she was a baby she had a squint that would need surgery. She will be six next month and there is no sign of a squint and her vision last week when here eyes were tested was fine. We were told she need not go back for a test for another two years, but we made it for twelve months time just to be safe.

I am concerned that she might get KC as the only one that never needed glasses n my familly were me and my mum and I am the one with KC. Hopefully she will take after my mum.

The other positive is that in the past eighteen years, there have been great advances in KC treatment. So given another ten years treatment will have moved on further. My life is easier now with KC than it was eighteen years ago, so I like to thing my daughter will have an even more normal life than me if she gets KC.

Hope this helps.

Gareth

Thanks, everyone for your replies.

Drew - Yes, my little one gets called names, 'wobbly eyes' and 'bog eyed Ben' and whilst currently he does not seem to register them too much I do know he doesn't like it. I also wonder whether it may hinder him when he is doing his work in class.
The way it has been explained to us is that it is a 'muscle' problem in each eye and I am under the impression that they need slackeing to stop his eyes turning outwards, as I am told they do from time to time, although so far I have not seen it.
Surgery is still quite a possibllity however just at present the hospital are monitoring the glasses, which have a slighly off prescription to cause him to focus and concentrate more. May sound odd however when he does concentrate he can control it to a point.

jayuk - so far no topography has been done, however maybe this is due to his age, he is only just turned 8.
At least if he is seeing the hospital quite regularly they should be able to pick things up quite quickly.

John - yes lets hope he takes after 'grandad' they do 'look' quite alike and both pull the same sulky face when asleep.
My husband is also very vertically challenged and my boy definately seems to be taking after grandad height wise.

Gareth - It seems my little one must have had this since birth too however, it was not picked up until 6 months or so ago, despite a visit to a high street opticians, who stated no problems.
Now we are at the hosptal stage so hopefully it will be monitored well and effectively treated as needed and so far this has been relatively quick and they are very good with him, expressing concern for him being 'bullied' about his eyes as much as correction on medical grounds.
I know what you are saying about the KC and hopefully things will advance more again over the next 10 years.
He too will hopefully see that 'mum' manages most things even though at times it is very funny getting an end result (hanging over the side of the bed to put lenses in etc)
He is also well aware of the danger of making cups of tea upside down and shouts quite loadly at me when I try this out every now and again.


Well hopefully my paranoia has settled a litte for now.

The hospital will be offering us beds soon, with me visiting every 3 months and the little one going every 2 months!!!

Once again thanks to all.

Susan

Been there with the cups of tea etc

Now when I put a cup down, I feel for the rim and see if I can move my finger side to side a couple of inches to make sure I hit both sides of the cup. At least I know I have it the right way up.

Pouring is another matter, so far resisted aiming the boiling watre at my fingers in the cup!

Now alcoholic beverages are a different matter, do not want to waste that!

Yes, I see what you mean Gareth.

I am usually ok now unless I am trying to do more than one thing at a time. Then sometimes I put the cup down and go back to the toaster, then return to the cup with the kettle and I normally hear a little scream ... mummy stop and all is back to normal.

Funny when I am on my own I don't seem to have the same problem, well not often anyway.


And as for alcohol, well where possible striaght from the bottle, avoids the spills and saves on washing up.

Susan

I see what you mean Susan about paranoya - because I am worried about my little brother (who is 13) whether he has go KC. He currently has got astigmatism in both eyes and I was wondering whether because I have KC, then is there an increased chance that he will have it too? He is going to the hospital tomorrow to see an optom for a check - up because they want to keep a close "eye" on him because of me. . hope he gets on ok! I am as much paranoid as you are about your daughter, but if you think about what gareth said, the improvements with KC treatment are likely to improve again like he said - fingers crossed!

Tom

maybe he's rubbing his eyes because of eyestrain or hayfever but there's no link with KC other than heresay. I wouldn't worry about the squints too much, my dad's in his seventies and has a double squint (only reads with one eye at a time) but he managed to be the first in his family to go to university and has a totally unblemished driving history. I've inherited it in one eye, but it's usually under control.