My son who is 14 was referred by the optician to the local childrens hospital as he told us he thought that my son had pinhole vision. The appointment took 3 months to come through. We went to the hospital expecting to see a doctor and for them to tell us that it was something and nothing. Nothing prepared me for what was being said.
I felt that I had got on a "roller coaster" and I couldn't to get off! After seeing a number of doctors, the consultant came to see us and said that he needed to carry out more tests but that he thought my son had a condition called "keratoconus". I had never heard of this before and they were not really that helpful in explaining the condition. I even had to ask them to write the name down so that I could do some research into condition. Your site has helped me to understand more about the condition.
We are being sent to see the genetics team, something to do with the fact that he has dry skin on hands and feet and very lax joints! He doesn't suffer from asthma, ezcema or anything else like that. Don't know what the link is but have to go along with what they say I suppose. He also has to have an "orb scan", whatever that may be. His next appointment at the hospital is not until September, when they are going to try different lenses to see if they can improve his vision but won't be prescribing any just yet. The consultant said that if they can't improve the sight significantly then he wouldn't be worried about this as he thought my son could cope perfectly well just being able to see out of one eye! Although they did say that he other eye was showing signs of deteriorating.
As you can imagine this thought fills me with fear. I am a glasses wearer and know what it feels like to not be able to see things clearly - if I take my glasses off I feel like I can't talk to people because they know that I can't see them properly. I know that isn't the case but worry as son is a young teenager who has been bullied in school in the past and who has come out the other side of this and appears to be quietly confident in a group of people! This could change if he can't see clearly.
After this appointment we are back again in October, hopefully with all the results. Can anyone help me and give me some ideas of what sort of questions that I should be asking when we go back.
One thing I would really like to know is does the condition affect the ability to learn to drive? My son has dreamed for years of the day when he can get his license - oh no! But I know that he will be absolutely devasted if he wasn't able to drive.
Help!
Moderators: Anne Klepacz, John Smith, Sweet
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Sweet
- Committee
- Posts: 2240
- Joined: Sun 10 Apr 2005 11:22 pm
- Keratoconus: Yes, I have KC
- Vision: Graft(s) and contact lenses
- Location: London / South Wales
(((Eileen)))
Ok hun dont panic! Loads and loads of questions i know, but you are in the right place! And hey you spelt it better than i did when i first got given the name!!!!!!!!!
Im glad that you have found loads of info, there is a lot here to read which is really good. I started wearing lenses at 14 as well but two years after couldnt wear one in my left eye anymore, so basically i only have one eye as well! And apart from a slight hiccup recently have been doing really well. You can see very well with one eye.
On driving i just had to do a visual field test so i know all about it. Basically it is the same as all eye probs, you need to read three lines on a chart and be able to read a number plate about 5 car lengths away. Oh and of course not forgetting that you need to wear glasses or lenses whenever you drive if you need them!! LOL!!
Basically from what i can remember, and its been a while im now 28! LOL!! It is a learning curve but you do adapt to lenses quite well, or at least i did. I am sure that when he has been seen properly and given glasses or lenses depending on what he needs he can start to work everything out.
It is worrying and there are so many questions to ask. I wish i had found this place then and not now when i could have really done with the support!
Please dont panic with lenses most people carry on with life very well. And also remember that most people who post here do so because they have a problem or a question to ask. There are loads more we dont know about who see really well and have no problems so dont post here!! LOL!! So please dont tihnk we all have problems with this condition!
Just ask specifically on what you would like to know as there are many patients here to help and share what they have gone through, and there are also two optometrists Lynn and Ali who im sure will reply as well!!
Ok ... well to be truthful here its gone midnight and i cant even remember most of what you asked now! LOL!! Am just hoping this helped, and will be around to reply to posts anytime. BTW you didnt say where you are living? That kinda helps with patients in the same place!
Take care
Love Sweet X x X
Ok hun dont panic! Loads and loads of questions i know, but you are in the right place! And hey you spelt it better than i did when i first got given the name!!!!!!!!!
Im glad that you have found loads of info, there is a lot here to read which is really good. I started wearing lenses at 14 as well but two years after couldnt wear one in my left eye anymore, so basically i only have one eye as well! And apart from a slight hiccup recently have been doing really well. You can see very well with one eye.
On driving i just had to do a visual field test so i know all about it. Basically it is the same as all eye probs, you need to read three lines on a chart and be able to read a number plate about 5 car lengths away. Oh and of course not forgetting that you need to wear glasses or lenses whenever you drive if you need them!! LOL!!
Basically from what i can remember, and its been a while im now 28! LOL!! It is a learning curve but you do adapt to lenses quite well, or at least i did. I am sure that when he has been seen properly and given glasses or lenses depending on what he needs he can start to work everything out.
It is worrying and there are so many questions to ask. I wish i had found this place then and not now when i could have really done with the support!
Please dont panic with lenses most people carry on with life very well. And also remember that most people who post here do so because they have a problem or a question to ask. There are loads more we dont know about who see really well and have no problems so dont post here!! LOL!! So please dont tihnk we all have problems with this condition!
Just ask specifically on what you would like to know as there are many patients here to help and share what they have gone through, and there are also two optometrists Lynn and Ali who im sure will reply as well!!
Ok ... well to be truthful here its gone midnight and i cant even remember most of what you asked now! LOL!! Am just hoping this helped, and will be around to reply to posts anytime. BTW you didnt say where you are living? That kinda helps with patients in the same place!
Take care
Love Sweet X x X
Sweet X x X
Eileen,
Welcome to the forum. I'm sure you have maaaannny a questions and things seem somewhat daunting! Take it easy....it;s not long since i was diagnosed and within a few days here things seemed alot morrree easier to digest..
Hospital appts, medical babble, life issues and everything is normal as soon as you hear of KC!
Believe me... most of us here were no different!
My advise would be to find out as much as you can about KC and understand it... help your son to understand... there's a few mothers here who can advise better!
as for questions... everything you think of... write it down... and when you go see that doc... ask him! Any questions in terms of experience and dealing with KC... theres masses of experience and support here..
fire away..!
You will get throught this.. one of the statistics... 90% of KC sufferers lead on a normal life .. (If it's wrong, someone will correct me!):P lool 0=X=====>
Regards
Welcome to the forum. I'm sure you have maaaannny a questions and things seem somewhat daunting! Take it easy....it;s not long since i was diagnosed and within a few days here things seemed alot morrree easier to digest..
Hospital appts, medical babble, life issues and everything is normal as soon as you hear of KC!
Believe me... most of us here were no different!
My advise would be to find out as much as you can about KC and understand it... help your son to understand... there's a few mothers here who can advise better!
as for questions... everything you think of... write it down... and when you go see that doc... ask him! Any questions in terms of experience and dealing with KC... theres masses of experience and support here..
fire away..!
You will get throught this.. one of the statistics... 90% of KC sufferers lead on a normal life .. (If it's wrong, someone will correct me!):P lool 0=X=====>
Regards
"Snowflakes are one of Nature's most fragile things, but just look at what they can do when they stick together!"
"Tell me and i'll forget, show me, and i may not remember, involve me, and i'll understand!"
"Tell me and i'll forget, show me, and i may not remember, involve me, and i'll understand!"
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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 Eileen,
It is a big shock at first, but from my experience age is on your sons side. I was diagnised at 17, still learnt to drive and then to race semi-professionally and have only just given up my motor sport license due to the type of lenses I need now, but still drive regularly. As long as he declares it on his aplication and achieves the minimum requiremnt of 20.5 meters to see a standard number plate, even if it is with only one eye, he will be fine. Medical technology is moving on and he does have three years to go and having a goal to aim for can do wonders when overcoming any obstacles we face in life.
One very important point to remember is that the condition can stabalise as qucik as it starts and stay that way for the rest of your sons life. There is a very large proportion of KC sufferers that only need contact lenses of one sort or another. Surgery is a last resort and then for about 5 - 10% of people with the condition. I have had KC for nearly 20 years and lead a pretty normal life as do a vast majority of people with KC.
As your son may be coming to end of year exams, get a copy of the student leaflet, the link is on the homepage of the site and make sure his teachers are aware of it. It will help make his studies easier as hopefully it will reduce one of the many concerns you two must have.
My personal feeling is that the doctor is not too worried about the eye as your son is 14 is that he is still growing so this may cause changes in the eye. The condition may still be in its early stages (a question for the next visit) so any strain on the better eye is minimal. To get maximum vision throughout the day I have to swap between which eye and can see out of, but now paying the price for my own foolishnes!
You and your sone should keep a pen and paper close to hand so everytime you think of a question or encounter a problem make a note. Then come the next consultation, you may not have time to get all questions answerd, but leave a copy with the consultant and they should thn send a reply in the post. It has worked for others here.
I will let you digest what has been put here already, but feel free to pm me. I have been down the student rout, learning to drive and done some training to become a driving instructor, got a degree, started to work, got married and had a kid. KC has a long way to go to get me beaten!
Regards
Gareth
It is a big shock at first, but from my experience age is on your sons side. I was diagnised at 17, still learnt to drive and then to race semi-professionally and have only just given up my motor sport license due to the type of lenses I need now, but still drive regularly. As long as he declares it on his aplication and achieves the minimum requiremnt of 20.5 meters to see a standard number plate, even if it is with only one eye, he will be fine. Medical technology is moving on and he does have three years to go and having a goal to aim for can do wonders when overcoming any obstacles we face in life.
One very important point to remember is that the condition can stabalise as qucik as it starts and stay that way for the rest of your sons life. There is a very large proportion of KC sufferers that only need contact lenses of one sort or another. Surgery is a last resort and then for about 5 - 10% of people with the condition. I have had KC for nearly 20 years and lead a pretty normal life as do a vast majority of people with KC.
As your son may be coming to end of year exams, get a copy of the student leaflet, the link is on the homepage of the site and make sure his teachers are aware of it. It will help make his studies easier as hopefully it will reduce one of the many concerns you two must have.
My personal feeling is that the doctor is not too worried about the eye as your son is 14 is that he is still growing so this may cause changes in the eye. The condition may still be in its early stages (a question for the next visit) so any strain on the better eye is minimal. To get maximum vision throughout the day I have to swap between which eye and can see out of, but now paying the price for my own foolishnes!
You and your sone should keep a pen and paper close to hand so everytime you think of a question or encounter a problem make a note. Then come the next consultation, you may not have time to get all questions answerd, but leave a copy with the consultant and they should thn send a reply in the post. It has worked for others here.
I will let you digest what has been put here already, but feel free to pm me. I have been down the student rout, learning to drive and done some training to become a driving instructor, got a degree, started to work, got married and had a kid. KC has a long way to go to get me beaten!
Regards
Gareth
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Pauline Houke
- Contributor
- Posts: 28
- Joined: Thu 12 May 2005 11:35 am
- Location: North East
Hi Eileen,
Just wanted to say that you have done the right thing by looking up all you can straight away about KC. Knowledge is power! You will now be in a much better position to discuss your son's treatment with the consultants. As usual the guys who have posted before me have given you some really good advice and I can't really add anything else except my best wishes to you both.
Just wanted to say that you have done the right thing by looking up all you can straight away about KC. Knowledge is power! You will now be in a much better position to discuss your son's treatment with the consultants. As usual the guys who have posted before me have given you some really good advice and I can't really add anything else except my best wishes to you both.
Never cry over spilt milk.It could have been whisky!
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Ali Akay
- Optometrist
- Posts: 201
- Joined: Thu 09 Jun 2005 9:50 pm
- Keratoconus: No, I don't suffer from KC
- Vision: I don't have KC
- Location: Hertfordshire, UK
Hi Eileen
The fact that they are not considering lenses for your son yet would suggest that it's rather mild.We dont know why but keratoconus almost always affects one eye more than the other and it sounds like your son has good vision in one eye and mild keratoconus in the other.As Sweet says it's quite possible to manage with one eye but two is obviously better!The only concern is that the eye with poor vision(it has to be rather poor) can sometimes diverge(turn outwards) and you need to look out for this.At 14 should not be a problem as it should be rectified once vision is improved with contacts.I am sorry but I am not sure about your son's age necessarily being a good sign.It'd be fair to say that as he is still growing there is a chance that his condition could progress before it stabilises, but as you've found out on this forum most patients cope well and live perfectly normal lives with contact lenses.Parents sometimes worry that delaying contact lens fitting could make the condition worse.I personally don't believe in this although there may be some practitioners thinking lenses could act as a brace.
To sum up, dont worry, he may never progress and may never need contact lenses,never mind surgery.If he does, the chances are he'll be OK.If he has hay fever,or other allergies please make sure he doesnt rub his eyes,uses allergy drops,cold compresses,etc.If he uses computers encourage him to have regular breaks as constantly staring at the screen could irritate the eyes and result in eye rubbing.There is a strong suggestion that EYE RUBBING IS BAD FOR YOU!!
The fact that they are not considering lenses for your son yet would suggest that it's rather mild.We dont know why but keratoconus almost always affects one eye more than the other and it sounds like your son has good vision in one eye and mild keratoconus in the other.As Sweet says it's quite possible to manage with one eye but two is obviously better!The only concern is that the eye with poor vision(it has to be rather poor) can sometimes diverge(turn outwards) and you need to look out for this.At 14 should not be a problem as it should be rectified once vision is improved with contacts.I am sorry but I am not sure about your son's age necessarily being a good sign.It'd be fair to say that as he is still growing there is a chance that his condition could progress before it stabilises, but as you've found out on this forum most patients cope well and live perfectly normal lives with contact lenses.Parents sometimes worry that delaying contact lens fitting could make the condition worse.I personally don't believe in this although there may be some practitioners thinking lenses could act as a brace.
To sum up, dont worry, he may never progress and may never need contact lenses,never mind surgery.If he does, the chances are he'll be OK.If he has hay fever,or other allergies please make sure he doesnt rub his eyes,uses allergy drops,cold compresses,etc.If he uses computers encourage him to have regular breaks as constantly staring at the screen could irritate the eyes and result in eye rubbing.There is a strong suggestion that EYE RUBBING IS BAD FOR YOU!!
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eileen hughes
- Contributor
- Posts: 20
- Joined: Tue 14 Jun 2005 10:46 pm
- Location: Liverpool
Thanks to everyone who has read and replied with words of comfort. I still feel like it is happening to somebody else child not mine! I keep thinking that maybe I have got things wrong but then I know I haven't as got the doctor to write on piece of paper exactly what they thought was wrong.
Ali, it is very difficult to convince my son that rubbing his eyes is bad for him, especially when we live near the beach and the sand is always blowing. He says his eyes are constantly itchy and dry. He has been given drops by the hospital and he has been good about putting them in. I don't think it has sunk in yet with him as to what is really going on.
Another thing I have been wondering about is should I be talking to his school now or waiting until we have been to see consultant again in October? He is starting GCSE course work in September and don't want to leave things too long without doing something. He is intending doing IT along with graphics and art as he really wants to become a graphic designer. The only good thing with his choice of subjects is that there is not an awful lot of actual reading from books.
Thanks again to everyone, at least we know that we aren't alone in this.
Ali, it is very difficult to convince my son that rubbing his eyes is bad for him, especially when we live near the beach and the sand is always blowing. He says his eyes are constantly itchy and dry. He has been given drops by the hospital and he has been good about putting them in. I don't think it has sunk in yet with him as to what is really going on.
Another thing I have been wondering about is should I be talking to his school now or waiting until we have been to see consultant again in October? He is starting GCSE course work in September and don't want to leave things too long without doing something. He is intending doing IT along with graphics and art as he really wants to become a graphic designer. The only good thing with his choice of subjects is that there is not an awful lot of actual reading from books.
Thanks again to everyone, at least we know that we aren't alone in this.
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Sweet
- Committee
- Posts: 2240
- Joined: Sun 10 Apr 2005 11:22 pm
- Keratoconus: Yes, I have KC
- Vision: Graft(s) and contact lenses
- Location: London / South Wales
Hey again!
It is nice that you are being so supporting and wanting to find out more! From what i can remember i was diagnosed at 15/16 but to be honest i cant remember having any chats with my parents about it. I think i was very independent and didnt really tell them anything, and i guess they didnt ask!! LOL!! We are very strange people at times! It wasn't until a few years ago that i thought i should look up what this condition is as i was tired i think of people asking, and only a few months back that i joined here.
Being a nurse people will probably wonder what the hell i was doing not to find out way back LOL!! But i guess as i was wearing a lens and getting good vision i didn't think much else about it, apart from declining a graft at last minute. Nerves kinda got the better of me! So i'm glad to see a somewhat better picture of this, in parents taking an interest and wanting to know.
On studies, i did have some trouble doing my GCSE's and 'A' levels but that was only because i didn't get the right contact lenses in the beginning. I spent 4 years in a small practice until they decided that they were right all along, they really didn't know what they were doing and so sent me back to the hospital where i got referred elsewhere! LOL it is funny now, but the whole mistake has left me with only one eye as too much scarring on the other one means that i cant wear a lens, and with a complete mistrust in the profession. I think had i had the right lenses i would have done much better, as after that i had very few problems. I think i was just brought up in a very small village in Wales, where i guess KC was a slight novelty. When my twin sister developed it years later she was sent straight to the hospital so she had no trouble.
Anyway ... long story aside!! I just wanted to say dont be where i was! Ask loads of questions and get them to explain everything to you. With the right glasses or lenses, your son will be able to see perfectly well to study. Just be careful with the oncoming stint at uni as drunken nights are another thing altogether when taking lenses out are concerned!! But i'm not making you worry here, lenses are not as bad as people make out!!
Take care!
Love Sweet X x X
It is nice that you are being so supporting and wanting to find out more! From what i can remember i was diagnosed at 15/16 but to be honest i cant remember having any chats with my parents about it. I think i was very independent and didnt really tell them anything, and i guess they didnt ask!! LOL!! We are very strange people at times! It wasn't until a few years ago that i thought i should look up what this condition is as i was tired i think of people asking, and only a few months back that i joined here.
Being a nurse people will probably wonder what the hell i was doing not to find out way back LOL!! But i guess as i was wearing a lens and getting good vision i didn't think much else about it, apart from declining a graft at last minute. Nerves kinda got the better of me! So i'm glad to see a somewhat better picture of this, in parents taking an interest and wanting to know.
On studies, i did have some trouble doing my GCSE's and 'A' levels but that was only because i didn't get the right contact lenses in the beginning. I spent 4 years in a small practice until they decided that they were right all along, they really didn't know what they were doing and so sent me back to the hospital where i got referred elsewhere! LOL it is funny now, but the whole mistake has left me with only one eye as too much scarring on the other one means that i cant wear a lens, and with a complete mistrust in the profession. I think had i had the right lenses i would have done much better, as after that i had very few problems. I think i was just brought up in a very small village in Wales, where i guess KC was a slight novelty. When my twin sister developed it years later she was sent straight to the hospital so she had no trouble.
Anyway ... long story aside!! I just wanted to say dont be where i was! Ask loads of questions and get them to explain everything to you. With the right glasses or lenses, your son will be able to see perfectly well to study. Just be careful with the oncoming stint at uni as drunken nights are another thing altogether when taking lenses out are concerned!! But i'm not making you worry here, lenses are not as bad as people make out!!
Take care!
Love Sweet X x X
Sweet X x X
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Ali Akay
- Optometrist
- Posts: 201
- Joined: Thu 09 Jun 2005 9:50 pm
- Keratoconus: No, I don't suffer from KC
- Vision: I don't have KC
- Location: Hertfordshire, UK
Hi Eileen
It's not unusual for a 14 year old lad to have itchy eyes due to hay fever, etc but it is not common to have dry eyes.I wonder if there is an underlying cause.Is he on any medication at all eg decongestants ?what drops is he taking?Ironically some allergy drops can make the eyes dry! The eye rubbing thing is a bit of an occupational hazard for me,whenever I see anyone rubbing their eyes in a social situation cant help lecturing them, much to my wife's horror!
You can only do your best but worth trying to get to the bottom of the cause for eye rubbing,a good pair of wraparound shades could help and are also "cool"
It's not unusual for a 14 year old lad to have itchy eyes due to hay fever, etc but it is not common to have dry eyes.I wonder if there is an underlying cause.Is he on any medication at all eg decongestants ?what drops is he taking?Ironically some allergy drops can make the eyes dry! The eye rubbing thing is a bit of an occupational hazard for me,whenever I see anyone rubbing their eyes in a social situation cant help lecturing them, much to my wife's horror!
You can only do your best but worth trying to get to the bottom of the cause for eye rubbing,a good pair of wraparound shades could help and are also "cool"
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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
One thing mentioned at the confrence today was that perhaps we need to adress some of the other problems we suffer as well as the KC. One of them was dry itchy eyes by using eye drops which needs to be investigated seperatly.
I saw the specialist wednesday after a problem with my lenses and although I di not feel I had too bad dry eyes, the drops I have got now are really helping and my wife has noted I am hardly rubbing my eyes now!
This may seem another hurdle, but if it is a means to an end in that eye rubbing is reduced, you and your sone will be happy with no more lectures and more comfortable eyes.
You have nothing to loose by getting it investigated.
Regards
Gareth
I saw the specialist wednesday after a problem with my lenses and although I di not feel I had too bad dry eyes, the drops I have got now are really helping and my wife has noted I am hardly rubbing my eyes now!
This may seem another hurdle, but if it is a means to an end in that eye rubbing is reduced, you and your sone will be happy with no more lectures and more comfortable eyes.
You have nothing to loose by getting it investigated.
Regards
Gareth
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