Any advice for mother of 12 year old...please

[DottyD]

Hi,

My 12year son was diagnosed with KC at Christmas - severe in eft eye mild in right - he refuses to wear his glasses, which we've now been told won't help much anyway!!

We have had a rigid lens for the last 8 weeks for his left eye - appointments not long enough for both. Anyway in the last 8 weeks the lens has been in it's case more than his eye.

When we collected the lens he got it in 3 times and hasn't managed it once since. That job is now left to me - if we're lucky we can get it in within about 1 hour of trying but we have days where we just can't get it in. We're both getting frustarted - I also suffer with Fibromyaglia and the position I need to be in (left arm on his head holding the top lid) causes me pain which doesn't help.

I'm at the end of my tether with this - the hospial just say keep trying.

Can you please give me any tips on how to make this easier for both of us. I'm so looking forward to the day when not only does it go in within minutes but also for him it do it himself.

[rosemary johnson]

Hi DOtty, and welcome to the forums.
SOrry to hear both about the diagnosis, shocks it must have caused and the current problems.
First, if the glasses are making much difference, why should your son wear them? - indeed, if his vision is getting uch more short-sighted, he may find that he is getting more distraction from the frames and bits of dust on the lenses of the specs than he is getting benefit.
There's actually a similar problem with the lenses - is he actually getting much benefit from them?
It is possible that, if the condition is still pretty mild in his other eye, he has learned to rely on that and putting the lens in doesn't improve things for him markedly.
In other words.... part of the problem just might be incentive....
When I first got the lenses, I'd given up wearing glasses because all I could see withthem on was the dust on the specs. And putting contact lenses in mark the world immediately far far more clear, so I had every incentive to put them in and see what the world was like! (I remember when I first got home with them in, I sat down witht he day's newspaper to do the crossword and couldn't believe how big and clear the white squares were and how uch space between the clues!)
One possible incentive to getting the lens in is that if he has both eyes working togther, he should find it easier to judge distances - which might make playing sports easier, and banging knees on the edges of pieces of furniture harder, etc etc - and will make learning to drive hard in a few years time if he doesn't have binocular vision by then.
As regards gettting them in.....
Are these the corneal lenses? - about 8mm diameter, fit just over the iris? (Probably made of some Rigid Gas Permeable plastic.)
Can't comment on getting those in, as mine are sclerals and always have been (24mm diameter, like a 2p piece).
ut I do wish you both good luck and hope you find the trick to them soon.
It does sound like the optom isn't being as helpful with your difficulties as she (?) could be. Is (s)he sure the lens fits as well as it should?
Incidentaly, your son isn't the only one who has had to gt mum to get lenses in and out - I just couldn't bear to do it when I first got mine, so the fitter had to teach my mum to do it for me. This lasted till the following weekend, when my mum was in the bath and Dr Who starting in 10 minutes.... and i REALLY, REALLY want to SEE Dr Who properly!! - so it had to get the things to go in myself!
Though my mum still had to help get the things out sometimes..... until I realised I was having more difficulties ith the left one because I was much more dextrous with my right hand, so tried taking my lef tlens out "backhanded" with my right hand ovr the top of my head..... and then found I was succeeding far bettr with this than the right lens the normal way so tried my left hand "backhanded" for my right lens..... and have been doing it ever since, despite everyone who sees it thinking I'm crazy!
Hope you can manage to find a technique that works and get up and running with the thing.
Best wishes and gdo keep us posted.
Rosemary

[Lynn White]

Hi Dotty,

Glad to help out with advice but do need more information! One thing, Rosemary is quite right, if he has got used to using one eye then there may not be much incentive to go through the hassle of getting a lens in!

That aside though, what are the issues involved? Does you son find the lens too uncomfortable? Is he unable to control his lids? Does he roll his eyes around? Let me know what you having difficulty with and I'll gladly give you some tips!

Lynn

[DottyD]

Thanks for the replies - It's such a relief to know there are are people who understand.

Zach has an RGP lens that just fits inside the iris. He has been generally co-opertive - well most days. We have used all forms of blackmail, which usually work with him, but this time to no avail. As well as being unconfrtable He says the lens doesn't make any difference to his vision and this may be one of the problems. He said today that he cn see better when he wears his glasses but stil cannot be presuaded to wear them outside th house.

We have trouble keeping the eye open long enough to pop the lens in. We have practised opening and touching the eye but it all goes to pot when we try and add the lens.
I've watched him trying to put it in and he can't can't keep the top lid open long enough. I also think its partly because it is still uncomfortable for him and he's know it's going to "hurt" initally. We've tried changing the position of his arms and hands and taking his eye to the lens etc.

One thing I have noticed is that if we get it in he's able to wear to it for 6 - 8 hours, but the next day the top lid is then swollen and we don't usually get it in.

We are at the hospital in the morning where he's due to be measured for his right eye. As I'm now slightly better informed than before I'm hoping for a better visit and some more answers but any help or suggestions would be great.

[Libby]

Hi Dotty,
Your story sounds very familiar to me. I have KC and unfortunately the KC came in both of my eyes at the same time and it was quite severe, so like Rosemary I had every incentive to get my lenses in. However my daughter was diagnosed last November with KC in the right eye, like your son her lens has been in the case more that it has ever been in her eye. Although I am very grateful that her left eye seems ok I do think that she has learnt to adapt to seeing through that eye alone. She too has problems getting the lens into the eye and I feel she thinks its too much trouble (our problem as parents is that our encouragement to "give the lens at chance" can very soon be interpretted as nagging). I dont know what the answer to this one is but like you at least its comforting knowing that we are not alone.
All the best
Libby

[Lynn White]

Not sure if "in the morning" meant this morning or tomorrow!

If it was today, then hopefully you have explained much of what you explained to us here. One problem is that an RGP lens in one eye is very uncomfortable at first as you can notice it more than if you have them in both eyes. There will have been adaption to using ne eye and sometimes it can be more helpful to start off with a KC soft lens as at least the eye does not feel so different to the other.

However, as you are so near to having an appointment, you do need to talk this over with the contact lens fitter. Perhaps your son can also be shown exactly what improvement there is in vision in that eye and some explanation given of how binocular vision works. Sometimes children need to get involved in the details to become engaged with the overall "plan".

let us know how you go on.

Lynn

[Andrew MacLean]

Dotty

I am sorry that I was away when you first posted and did not welcome you to the forum. Well done on finding this little band of folks who try to support each other as they wrestle with their own KC or (more difficultly; the KC if the people they love).

My own son was diagnosed earlier in the year and I found his diagnosis much more difficult to manage than my own had been. Still, people are resilient, and with support it is amazing how we can cope. All the best.

Andrew

[clare f]

hi dotty, well i was diagnosed with KC when i was 12, so i know how your son is feeling, all i can say is, find a good consultant, mine was willing to spend hours with me until i could put my lenses in, i know they are probabely few and far between but look around. also just be patient i do and have since 12 word RGP lenses and they hurt!! when your son first puts them in they will water and sting, but tell him just to look forward he can blink all he wants i found this helpd, then just build up the time you put them in for. literally you can start with geting them in, leave them for a few minutes take them out, try again the next day but leave in for a bit longer this is what i had to do, the pain goes after the first few times of putting them in. howerever i think if your still not succeeding and your placing the lens on his eye he blinks and it comes out numerous times- it might not be the right fit- this will also be painful.
dont worry keep going, believe me its a scarey thing to be told at 12 that your going to wear contacts all your life and things could get a lot worse, so tell him he's doing a good job just trying. Persistance is they key!!

[DottyD]

Thanks for the advice Claire, Thanks have gone a bit downhill since my post.

We've been back for a review appointment which hasn't gone well. We made an emergency appointment which she was cross about as she felt it was not an emergency. To be fair I would of been happy to have spoken to her on the phone but she's only in one day a week and I was told this wasn't an option. She said we could leave it 6 months then try again or we could keep trying and she would work with us.

We then went back the following week as Zach doesn't want to wear his glasses and is keen to get this sorted but it got worse.

The lens lady said the lens would not hurt if its in the right place so we must be putting it in wrong - but then she couldn't get it in and made his eye really sore. When we have got the lens it I've made sure it's where she told me it should be - but what do I know?

She then gave him an eye test and accused him of lying. Fortunately I was not able to go on this visit as I don't think I could of restrained myself. My husband did tell her that we won't be back for at least 6 months.

From what I can tell she is the only person in Swindon to fit KC lens so I don't really know what to do now. I am very reluctant to go back - she doesn't seem to have the patience which I think Zach needs - our appointments always feel really rushed and are very stressful but at the moment I cannot see any other option.
She has said we can go back any time but that te lens must be in - yeah right - somedays it can take over 1/2 - 1 hour to get it in!

Anyway thanks for the advise - I'm keeping all of the posts so we can refer back to them when we do get the lens in!.

Thanks

[Andrew MacLean]

Dotty

Is this a hospital optometrist? If so, I think I'd complain.

The conduct you describe is just not acceptable.

Why not ask Zach's ophthalmologist for a referral to another optometrist?

Andrew