My son was at the hospital a month ago and we were told he has 6/60 vision in his left eye. Next week he is having his first try at contact lens to correct his vision to 6/36. I do hope that at eleven years old he can tolerate them. His other eye at the moment is 6/5. After some research we have found that in London they may perform crosslinking on a person so young in a private clinic. We don"t know which way to turn at the moment. We are at the hospital next week and will be asking alot of questions. Basically we want to try and help him by any means but however with his vision being fine in his other eye we don't know if we should leave well alone. His vision has got worse over the few months since he was diagnosed.
Any advice would be helpful.
Advice please
Moderators: John Smith, Sweet
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Anne Klepacz
- Committee
- Posts: 2266
- Joined: Sat 20 Mar 2004 5:46 pm
- Keratoconus: Yes, I have KC
- Vision: Graft(s) and contact lenses
Re: Advice please
Linda,
11 seems VERY young for crosslinking. At the recent European keratoconus conference in Toulouse, even the pioneer of this procedure from Germany gave 12 as the lower age limit. And many specialists would be reluctant to do it this young. Hopefully your son will find his contact lens gives him much better vision, which will give him the motivation to build up the wear time and get used to the lens. Do, of course, ask all the questions you can next week, but I would have thought you need to see how well lenses will work before thinking about other options. I hope you'll both be pleasantly surprised at how much difference they'll make!
Anne
11 seems VERY young for crosslinking. At the recent European keratoconus conference in Toulouse, even the pioneer of this procedure from Germany gave 12 as the lower age limit. And many specialists would be reluctant to do it this young. Hopefully your son will find his contact lens gives him much better vision, which will give him the motivation to build up the wear time and get used to the lens. Do, of course, ask all the questions you can next week, but I would have thought you need to see how well lenses will work before thinking about other options. I hope you'll both be pleasantly surprised at how much difference they'll make!
Anne
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linda36
- Contributor
- Posts: 21
- Joined: Mon 24 Sep 2007 11:25 am
- Keratoconus: No, I don't suffer from KC
Re: Advice please
Anne
Thank you for the advice. I do hope the lens gives him better vision. He is very young I feel for any kind of invasive procedures, it worries me at the moment more than it worries him. He is the average eleven year old into sport etc and I guess we will have fun with the lens. I can imagine lots of trips to get replacements. Just a quick question, the hospital we attend is in the city quite far away from the little village we live in, do you think our local optician will replace any lost or damaged lens? I do hope so.
On another note the internet is a very good way to find out info but however I feel that sometimes too much info is a very bad thing(for worried parents) on the other hand thank god for this forum!
Kind Regards
LInda
Thank you for the advice. I do hope the lens gives him better vision. He is very young I feel for any kind of invasive procedures, it worries me at the moment more than it worries him. He is the average eleven year old into sport etc and I guess we will have fun with the lens. I can imagine lots of trips to get replacements. Just a quick question, the hospital we attend is in the city quite far away from the little village we live in, do you think our local optician will replace any lost or damaged lens? I do hope so.
On another note the internet is a very good way to find out info but however I feel that sometimes too much info is a very bad thing(for worried parents) on the other hand thank god for this forum!
Kind Regards
LInda
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Anne Klepacz
- Committee
- Posts: 2266
- Joined: Sat 20 Mar 2004 5:46 pm
- Keratoconus: Yes, I have KC
- Vision: Graft(s) and contact lenses
Re: Advice please
Hi Linda,
Most of us have spent happy hours on our hands and knees searching for lost lenses whatever age we are! I hope you won't need too many replacements. Whether your local opticians will be able to provide these from the prescription given by the hospital is hard to say. Many community optometrists see KC so rarely that they don't stock the kind of specialist lenses needed, and don't have experience in fitting KC. But you may be lucky and find that your optician has a particular interest in the condition! But your hospital clinic should be able to post replacements for lost or damaged lenses to you - and it's a good idea to have a spare pair for just that eventuality in case it takes several weeks to get a replacement.
And I agree with you about the internet. It's great that there is now information out there, but it's all too easy to latch on to the worst case scenarios and get panicked! With conditions like KC, taking one step at a time and trying not to worry too much about what the future may bring is probably best. And as you know, there are now more options becoming available for us, so the prospects are much brighter than they were even 10 years ago.
Anne
Most of us have spent happy hours on our hands and knees searching for lost lenses whatever age we are! I hope you won't need too many replacements. Whether your local opticians will be able to provide these from the prescription given by the hospital is hard to say. Many community optometrists see KC so rarely that they don't stock the kind of specialist lenses needed, and don't have experience in fitting KC. But you may be lucky and find that your optician has a particular interest in the condition! But your hospital clinic should be able to post replacements for lost or damaged lenses to you - and it's a good idea to have a spare pair for just that eventuality in case it takes several weeks to get a replacement.
And I agree with you about the internet. It's great that there is now information out there, but it's all too easy to latch on to the worst case scenarios and get panicked! With conditions like KC, taking one step at a time and trying not to worry too much about what the future may bring is probably best. And as you know, there are now more options becoming available for us, so the prospects are much brighter than they were even 10 years ago.
Anne
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jenny stead 43
- Newbie
- Posts: 2
- Joined: Tue 18 Mar 2008 4:49 pm
- Keratoconus: No, I don't suffer from KC
Re: Advice please
Hi,
I was just sharing an experience with my son, 15 who took to his lenses extremely well, he is doing GCSE PE at school and also plays football, he pops the lenses out when he needs to for sport and visits the school office to put them back in when he is finished it has worked out really well for him although he is quite angry with his diagnosis, good luck and hope all goes well.
I was just sharing an experience with my son, 15 who took to his lenses extremely well, he is doing GCSE PE at school and also plays football, he pops the lenses out when he needs to for sport and visits the school office to put them back in when he is finished it has worked out really well for him although he is quite angry with his diagnosis, good luck and hope all goes well.
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linda36
- Contributor
- Posts: 21
- Joined: Mon 24 Sep 2007 11:25 am
- Keratoconus: No, I don't suffer from KC
Re:
Jenny
It is good to know we are not alone. We got his first lens 8 weeks ago. He is coping ok, however he is finding it hard to remove the lens. His eyes are very sore and red for a long time after. The hospital have been fantastic, we have to go every 4 weeks, so he enjoys time off school. However he is having trouble sleeping and it is often 2 am before he goes to sleep. I do think the last couple of months is playing on his mind. It is hard to know what to say to him at times, any advice ?
Kind regards and good luck to you and your family.
linda
It is good to know we are not alone. We got his first lens 8 weeks ago. He is coping ok, however he is finding it hard to remove the lens. His eyes are very sore and red for a long time after. The hospital have been fantastic, we have to go every 4 weeks, so he enjoys time off school. However he is having trouble sleeping and it is often 2 am before he goes to sleep. I do think the last couple of months is playing on his mind. It is hard to know what to say to him at times, any advice ?
Kind regards and good luck to you and your family.
linda
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