teenagers and KC

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Helen Scholar
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teenagers and KC

Postby Helen Scholar » Sun 06 Jun 2004 10:12 pm

I wondered if any of you with teenage children with KC have suggestions about a couple of issues I'm not sure how to approach with/for my 15 year old son.

First GCSEs. He does most of these next year, but he has some modular exams coming up soon. On the basis of the experience he is having this summer (bad hayfever, sore eyes, a lost lens and a spare which doesn't seem to fit properly) I'm wondering whether I need to put anything in place in case he finds himself really struggling this time next year. Not sure what options, if any, there are but perhaps some provision for extra time if needed? Does anyone have any information about this?

Second, strategies for joining in activities and social (or perhaps that should be anti-social!) teenage stuff. e.g. he won't go camping with his mates because he's worried about coping with his lenses in the middle of a wood somewhere, and now says he can't go swimming in case he loses one again. Wondered how other people have managed the practical aspects of these kinds of things?

Tricia Miller
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Teenagers and KC

Postby Tricia Miller » Mon 07 Jun 2004 3:12 pm

Before my son took his A levels about five years ago his optician said that he should be able to get extra time in his exams. I believe we got a letter from the doctor and submitted it to the school who forwarded it on to the relevant authority. The end result was that he was given extra time. It may have been 25% extra time in each exam but can't remember for sure.

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dray
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Postby dray » Sat 31 Jul 2004 10:30 am

Hi im 26 now but when i was 12 i was finally diagnosed with KC, previously they thought it was a lazy eye(right) from 12 to 26 both eyes have deteriorated.

I have never let it affect my social or sport life, i hated contact lenses and would hardly wear them at all, i would never wear them when doing sport because they were so uncomfortable and made my eyes water at the slightest breeze of air.

I too suffer badly from hayfever but i got into the habbit of washing my eyes out every hour or so with fresh water, this is better then any hayfever tablet or eye drops/wash.

My advice si to tackly things as they arise, i cant forsee and serious obstacles for you just yet.
First stop your son wearing a lens if it doesnt fit properly this can only do damage, GCSE's - follow Tricias idea about exams although i never did and didnt find it made too much difference aside from taking a while longer to read the questions. Dont fuss too much, my mum did and i didnt like it it made me feel like more of an invalid than i was.
Second If he goes camping does he have to wear his lenses? or can he survive with glasses, thats what i used to do scrap the lenses and use the glasses, alright it wasnt that great but atleast i was having fun with my friends, dont let him live his life around the lenses and glasses make them live around his life. Swiming with contacts is a big no no, when i wnet swiming i couldnt see a damm thing, still cant, underwater, but it didnt affect my having fun or doing it to keep fit.
My advice is to live his life as he wish's and if he wants to do things then do them, with or without contacts or glasses.
I am going to be looking into mini scleral lenses and possible corneal transplant perhaps mini sclerals depending on how acute KC is in your son maybe an answer.

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Helen Scholar
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Postby Helen Scholar » Tue 03 Aug 2004 9:03 pm

Thanks for comments - have approached school re extra time for exams, and am trying not to fuss too much as dray advises, but am probably failing miserably. Unfortunately my son can't manage without his lenses - glasses only help one eye a little and I think he feels quite vulnerable without them. However, he now is swimming with a decent pair of goggles and a set of spare lenses!

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Helen Scholar
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Postby Helen Scholar » Tue 03 Aug 2004 9:04 pm

Thanks for comments - have approached school re extra time for exams, and am trying not to fuss too much as dray advises, but am probably failing miserably. Unfortunately my son can't manage without his lenses - glasses only help one eye a little and I think he feels quite vulnerable without them. However, he now is swimming with a decent pair of goggles and a set of spare lenses!


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