i am a father of 15 years old son who has recently been refered for contact lenses after corneal mapping.his vision is 6/12 right eye 6/6 left eye.i have got some questions for you nice people obviously coming from the mind of a worried parent.
1-if he has no problems in day to day life at studies and at sports why should we start using the lenses as they dont halt disease ..and will only cause side effects.
2-how is your experience re homeopathy.
3-are you aware of any doctor who specializes in KC in leeds/doncaster/hull area or nearby who could give us a private opinion.
4-could you share with me that how many of you with level of vision6/12 at 15 years of age went onto have transplant.
sound lot of questions but i hope you will understand.thanks.
homeopathy
Moderators: Anne Klepacz, John Smith, Sweet
-
John Smith
- Moderator
- Posts: 1941
- Joined: Thu 08 Jan 2004 12:48 am
- Keratoconus: Yes, I have KC
- Vision: Graft(s) and spectacles
- Location: Sidcup, Kent
Hello Sami,
Are you saying that your son is 6/6 and 6/12 without lenses or glasses? If so, that's pretty good.
Nobody can honestly tell you whether your son will progress to needing a graft - we're all different. By all means though consult a doctor (someone's bound to know somebody) as more information will certainly be useful to you.
I'm not sure why your son is being prescribed lenses - what sort? - but it is unlikely that the lenses cause side effects!
Are you saying that your son is 6/6 and 6/12 without lenses or glasses? If so, that's pretty good.
Nobody can honestly tell you whether your son will progress to needing a graft - we're all different. By all means though consult a doctor (someone's bound to know somebody) as more information will certainly be useful to you.
I'm not sure why your son is being prescribed lenses - what sort? - but it is unlikely that the lenses cause side effects!
John
-
jayuk
- Ambassador
- Posts: 2148
- Joined: Sun 21 Mar 2004 1:50 pm
- Location: London / Manchester / Cheshire
Hi Sami
To answer your questions
1-if he has no problems in day to day life at studies and at sports why should we start using the lenses as they dont halt disease ..and will only cause side effects.
Good point, and the answer is, He doesnt need to. If HE can get by day to day and function there is no reason why he would need lenses/glasses. However only HE can determine that.
2-how is your experience re homeopathy.
Swings and roundabouts!....Some have success some dont, some find it more placebo, some feel they get real results.....I personly feel that there is a place for Homeopathy
3-are you aware of any doctor who specializes in KC in leeds/doncaster/hull area or nearby who could give us a private opinion.
Not off hand, however I would suspect your doctor may be aware of the corneal specialiists..or someone here may know
4-could you share with me that how many of you with level of vision6/12 at 15 years of age went onto have transplant.
Pass -
J
To answer your questions
1-if he has no problems in day to day life at studies and at sports why should we start using the lenses as they dont halt disease ..and will only cause side effects.
Good point, and the answer is, He doesnt need to. If HE can get by day to day and function there is no reason why he would need lenses/glasses. However only HE can determine that.
2-how is your experience re homeopathy.
Swings and roundabouts!....Some have success some dont, some find it more placebo, some feel they get real results.....I personly feel that there is a place for Homeopathy
3-are you aware of any doctor who specializes in KC in leeds/doncaster/hull area or nearby who could give us a private opinion.
Not off hand, however I would suspect your doctor may be aware of the corneal specialiists..or someone here may know
4-could you share with me that how many of you with level of vision6/12 at 15 years of age went onto have transplant.
Pass -
J
KC is about facing the challenges it creates rather than accepting the problems it generates -
(C) Copyright 2005 KP
(C) Copyright 2005 KP
-
GarethB
- Ambassador
- Posts: 4916
- Joined: Sat 21 Aug 2004 3:31 pm
- Keratoconus: Yes, I have KC
- Vision: Graft(s) and contact lenses
- Location: Warwickshire
Hi Sami,
Welcome to the forum and first I must say, KC is unlikely to have any affect on your sons education, I went through A levles prior to a graft, graduated from University and have an extremely well payed job and until recently used to race cars at a semi-profesional level. So your son and the rest of the familly should live life to the full as if nothing is wrong. I have had KC for 20 years with little or no impact on my life and love of dangerous sports.
1) lens will not cause side effects, if theye are worn sensibly, kept clean and not worn for excessive periods he will be fine. I used to play rugby when first diagnosed and wear lenses and if a lens fell out, I would pick it up, spit on it and put it back. Typical teenager stuff, but I would not do that now I am in my 30's.
2) I am not qualified on the homeopothy, but there is a homepoathic KC sufferer who will give better advice. However it can help with related conditions such as asthem eczema, hay fever and dry eyes to make lens wear more tolerable if you son has any of the afore mentioned conditions.
3)In my experience the qulity of service from NHS to private is the same. In my area, the NHS is as quick as going private, not sure about your area though, but there are people who will respond from the yorkshire area. Your GP may well be able to refer you to a provate opthalmologist in your area.
4) To be honest, national statistics imply that 90 - 95% of people with KC cope fine with sight correction of some sort, be it glasses or the wide range of contact lenses now available. The number of people requiring grafts is small and I would not waste time thinking about it at this stage.
To be honest you ahve not aked many questions, but what I will say is KC is very unpredictable, it can stop as quick as it starts. By stop, I mean it stabalises and does not get worse, or it can stabilise for many years and then detriorate before stabilising again. In some KC can be quite agressive requiring a grfat quicte quickly which was my case.
More treatments are becoming available to offset the need for a graft such as C3R and now a procedure called mini-ark has been discussed on this site.
A graft should by no means be considerd a cure, it is another long term management startegy that in most cases will still need site correction from glasses or contact lenses. Although the results are very good and the procedure has been around for 100 years now, there is still little information about these people post 10 and 20 years post op.
It is well worth downloading the student leaflet from this site and reading it and giving copies to your sons school and teachers to make them aware of potential issues he may face. Thisw ay he will have the same quality of eductation as his friends.
There are other teenagers on this site as well as parents, so get him to post and have a look. It is good for us all to chare experiences and support each other from a patient point of view as well as a relatives point of view.
Welcome to the forum and first I must say, KC is unlikely to have any affect on your sons education, I went through A levles prior to a graft, graduated from University and have an extremely well payed job and until recently used to race cars at a semi-profesional level. So your son and the rest of the familly should live life to the full as if nothing is wrong. I have had KC for 20 years with little or no impact on my life and love of dangerous sports.
1) lens will not cause side effects, if theye are worn sensibly, kept clean and not worn for excessive periods he will be fine. I used to play rugby when first diagnosed and wear lenses and if a lens fell out, I would pick it up, spit on it and put it back. Typical teenager stuff, but I would not do that now I am in my 30's.
2) I am not qualified on the homeopothy, but there is a homepoathic KC sufferer who will give better advice. However it can help with related conditions such as asthem eczema, hay fever and dry eyes to make lens wear more tolerable if you son has any of the afore mentioned conditions.
3)In my experience the qulity of service from NHS to private is the same. In my area, the NHS is as quick as going private, not sure about your area though, but there are people who will respond from the yorkshire area. Your GP may well be able to refer you to a provate opthalmologist in your area.
4) To be honest, national statistics imply that 90 - 95% of people with KC cope fine with sight correction of some sort, be it glasses or the wide range of contact lenses now available. The number of people requiring grafts is small and I would not waste time thinking about it at this stage.
To be honest you ahve not aked many questions, but what I will say is KC is very unpredictable, it can stop as quick as it starts. By stop, I mean it stabalises and does not get worse, or it can stabilise for many years and then detriorate before stabilising again. In some KC can be quite agressive requiring a grfat quicte quickly which was my case.
More treatments are becoming available to offset the need for a graft such as C3R and now a procedure called mini-ark has been discussed on this site.
A graft should by no means be considerd a cure, it is another long term management startegy that in most cases will still need site correction from glasses or contact lenses. Although the results are very good and the procedure has been around for 100 years now, there is still little information about these people post 10 and 20 years post op.
It is well worth downloading the student leaflet from this site and reading it and giving copies to your sons school and teachers to make them aware of potential issues he may face. Thisw ay he will have the same quality of eductation as his friends.
There are other teenagers on this site as well as parents, so get him to post and have a look. It is good for us all to chare experiences and support each other from a patient point of view as well as a relatives point of view.
Gareth
-
Andrew MacLean
- Moderator
- Posts: 7703
- Joined: Thu 15 Jan 2004 8:01 pm
- Keratoconus: Yes, I have KC
- Vision: Other
- Location: Scotland
I dont have much to add either, but here it is
1-if he has no problems in day to day life at studies and at sports why should we start using the lenses as they dont halt disease ..and will only cause side effects.
I think it depends on his clarity. I was seeing 6/6 out of both eyes, 6/15 out of my right and 6/6 unaided but getting headaches was squinting a lot more and tired. I am post bilateral grafts btw. I had not worn glasses for nearly 10 years. I chose to go back to glasses to get clarity and make life easier. What I am trying to say is he may be making out the chart, but that does not mean it is a stress free read. He just may need a bit of clarity which glasses or lenses can give him. Talk to him about it. Why did you get his eyes checked? was he having trouble at school getting headaches etc, the answers to these questions may help you know if he needs correction or not. What I am trying to say is their is 6/6 and 6/6
2-how is your experience re homeopathy.
Never really tried much with my KC, however a diet with lots things good for the eyes Vitamin a, omega 3 etc is not going to hurt him. I also believe homeopathy works well alongside conventional medicine.
3-are you aware of any doctor who specializes in KC in leeds/doncaster/hull area or nearby who could give us a private opinion.
As i live in OZ no
4-could you share with me that how many of you with level of vision6/12 at 15 years of age went onto have transplant.
I was diagnosed at 18 and my vision was worse than that then. I went from reading the bottom line of an eye chart to 6/36 in 3 months, my daughters opthal nearly fell out of her chair at that one. my sister was the same.
My daughter is 4 and I was told she looks like having early KC, I am asking myself the same questions now, and I have lived with KC for 20 years. I still dont know the answer. It can start and stop progressing at aqny time, usually there are periods of rapid change, usually it slows at some stage, sometimes it stops sometimes it starts again. I wish I had the answers for you, we all do because then we would have them ourselves, and this is in my opinion one of the worse things about KC. Be patient, be viligant, be supportive and go to appointments with him. You get so much more out of an appt when 2 or 3 ears are hearing the dr, because it is scary and strange we all pick up on a different comment.
I had my first graft 9 years after diagnosis. I was lens intolerant.
Ok maybe I did add a bit.
1-if he has no problems in day to day life at studies and at sports why should we start using the lenses as they dont halt disease ..and will only cause side effects.
I think it depends on his clarity. I was seeing 6/6 out of both eyes, 6/15 out of my right and 6/6 unaided but getting headaches was squinting a lot more and tired. I am post bilateral grafts btw. I had not worn glasses for nearly 10 years. I chose to go back to glasses to get clarity and make life easier. What I am trying to say is he may be making out the chart, but that does not mean it is a stress free read. He just may need a bit of clarity which glasses or lenses can give him. Talk to him about it. Why did you get his eyes checked? was he having trouble at school getting headaches etc, the answers to these questions may help you know if he needs correction or not. What I am trying to say is their is 6/6 and 6/6
2-how is your experience re homeopathy.
Never really tried much with my KC, however a diet with lots things good for the eyes Vitamin a, omega 3 etc is not going to hurt him. I also believe homeopathy works well alongside conventional medicine.
3-are you aware of any doctor who specializes in KC in leeds/doncaster/hull area or nearby who could give us a private opinion.
As i live in OZ no
4-could you share with me that how many of you with level of vision6/12 at 15 years of age went onto have transplant.
I was diagnosed at 18 and my vision was worse than that then. I went from reading the bottom line of an eye chart to 6/36 in 3 months, my daughters opthal nearly fell out of her chair at that one. my sister was the same.
My daughter is 4 and I was told she looks like having early KC, I am asking myself the same questions now, and I have lived with KC for 20 years. I still dont know the answer. It can start and stop progressing at aqny time, usually there are periods of rapid change, usually it slows at some stage, sometimes it stops sometimes it starts again. I wish I had the answers for you, we all do because then we would have them ourselves, and this is in my opinion one of the worse things about KC. Be patient, be viligant, be supportive and go to appointments with him. You get so much more out of an appt when 2 or 3 ears are hearing the dr, because it is scary and strange we all pick up on a different comment.
I had my first graft 9 years after diagnosis. I was lens intolerant.
Ok maybe I did add a bit.
-
Lynn White
- Optometrist
- Posts: 1398
- Joined: Sat 12 Mar 2005 8:00 pm
- Location: Leighton Buzzard
Hi Sami...
A couple of things to add here... you do not say if he gets some vision in glasses or not? Although he is reasonably ok with 6/12 in one eye, you have to consider that because his eyes are not seeing the same thing, his depth perception is not as good as it could be. If he plays sports a lot that might affect him if he does not have his vision corrected. Other than that, at the moment, he is not a lot worse off than a lot of other youngsters who need glasses but don't wear them!
The main thing here is that if you do not go ahead with glasses or contacts at this tiome, then he does need to be monitored regularly, as KC is a sneaky condition that can get worse without you noticing - especially when in one eye more than the other.
As to how many go on to have a transplant I am afraid that is a "how long is a peiec of string" question because some people with KC never ever progress beyond what your son is like now!
Very generally speaking,. KC is active for about ten years - and you probably don't actually know when his started.
It is probably best to keep in mind that people who post here do so because they are in the group that did progress and have problems, but as a optometrist, I actually see many people that didn't actually progress that much so as they don't have a problem with their KC, they don't tend to come on boards like this... so just a warning not to be over worried! Many many people have KC and don't progress to graft.
However, if you ahev any mor equeries or can fill me in with more details, I will be able to answer you more throroughly!
Lynn
A couple of things to add here... you do not say if he gets some vision in glasses or not? Although he is reasonably ok with 6/12 in one eye, you have to consider that because his eyes are not seeing the same thing, his depth perception is not as good as it could be. If he plays sports a lot that might affect him if he does not have his vision corrected. Other than that, at the moment, he is not a lot worse off than a lot of other youngsters who need glasses but don't wear them!
The main thing here is that if you do not go ahead with glasses or contacts at this tiome, then he does need to be monitored regularly, as KC is a sneaky condition that can get worse without you noticing - especially when in one eye more than the other.
As to how many go on to have a transplant I am afraid that is a "how long is a peiec of string" question because some people with KC never ever progress beyond what your son is like now!
Very generally speaking,. KC is active for about ten years - and you probably don't actually know when his started.
It is probably best to keep in mind that people who post here do so because they are in the group that did progress and have problems, but as a optometrist, I actually see many people that didn't actually progress that much so as they don't have a problem with their KC, they don't tend to come on boards like this... so just a warning not to be over worried! Many many people have KC and don't progress to graft.
However, if you ahev any mor equeries or can fill me in with more details, I will be able to answer you more throroughly!
Lynn
-
rosemary johnson
- Champion
- Posts: 1478
- Joined: Tue 19 Oct 2004 8:42 pm
- Keratoconus: Yes, I have KC
- Vision: Contact lenses
- Location: East London, UK
Hi, and welcome.
1. I'm not clear if the figures you quote are for best vision with glasses, or unaided, and if the latter, what is currently achieved with glasses.
Either way - if he can see well enough with glasses, there's no need to go to contacts yet.
However, it's a good idea to get into the system so he's getting regular checks, as KC can sometimes change rapidly, and if he does deteroirate fast, you don't wnat to be waiting six months (say) for an appointment with exams, going to college, whatever, looming.
Also .... people may reckon they are coping because they've got used to it, and don't realise how much better vision would be possible. And kids may not want to admit to any weaknesses!
I remember being quite stunned by ho much better I saw when I first got my first contact lenses.
2. never had any urge to try it; sorry.
3. no, sorry.
4. I probably (can't remember exactly) couldn't see that well with my contacts at age 15; certainly nowhere near it without them. And glasses made no difference. That was nearly 30 years ago and I'm not grafted yet, nor lined up for a graft.
Rosemary
1. I'm not clear if the figures you quote are for best vision with glasses, or unaided, and if the latter, what is currently achieved with glasses.
Either way - if he can see well enough with glasses, there's no need to go to contacts yet.
However, it's a good idea to get into the system so he's getting regular checks, as KC can sometimes change rapidly, and if he does deteroirate fast, you don't wnat to be waiting six months (say) for an appointment with exams, going to college, whatever, looming.
Also .... people may reckon they are coping because they've got used to it, and don't realise how much better vision would be possible. And kids may not want to admit to any weaknesses!
I remember being quite stunned by ho much better I saw when I first got my first contact lenses.
2. never had any urge to try it; sorry.
3. no, sorry.
4. I probably (can't remember exactly) couldn't see that well with my contacts at age 15; certainly nowhere near it without them. And glasses made no difference. That was nearly 30 years ago and I'm not grafted yet, nor lined up for a graft.
Rosemary
Return to “General Discussion Forum”
Who is online
Users browsing this forum: No registered users and 64 guests