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Post Info TOPIC: x linking
LYNNDA

Date: Wed May 28 4:03 PM, 2008
x linking
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hello ,my name is lynnda

I am currently on a quest to find out if crosslinking will soon be available in northern ireland.

i know it is available in dublin and i will contact them.

my son is 16 and was diagnosed earlier this year.My optician did not tell us about this treatment but when i recently went back to ask for further advise he advised caution because if it's newness and the relativley small studies that have so far been done.

He says however that he feels kc will in 5-10 years no longer be a problem because of new treatments.


He also says that it is a 'tough call 'whether or not my son should have this done - at the moment he is 6/6 in his left eye and 6/7 in his right and apparently within a few years he will need contact lenses.

At the moment he is fine even without glasses because his good eye is compensating but i fear waiting in case his right eye could become suddenly worse.

This is on my mind night and day and i wonder is anyone else in the same situation.

i have been in touch with the london vision clinic and they say their results are good but cannot treat anyone under 18 and would not advise waiting in case of progression.

I know Dr David Jory can treat younger patients but i just don't know what to do .

i feel sometimes that we are very much on our own with this.

Both london and dublin are a long way from here and it seems like a very big step but at least there is hope.

Also there is





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Date: Mon Jun 2 1:26 AM, 2008
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Lynnda, there are several parents on this board who have had their children's eyes crosslinked at around the same age. My heart goes out to you, as I know that this preys on your mind, as you say, day and night. My own son was diagnosed at an older age, and had crosslinking and intacs at the age of 22. His vision is not perfect, but he manages to drive and do his college class work now without any corrective lenses. We had to travel from NY to CA because crosslinking was not widely available in the USA at the time, in fact it is only now in its clinical trials over here. I have never regretted making that trip. My only regret is that he did not tell us sooner that his vision was getting worse, because I feel that if we had the crosslinking even sooner, his vision would be even better today.

Continue to interview doctors--I believe some of the younger patients were treated in Germany. There was a woman inquiring recently from Chicago, who took her son there very shortly after he was diagnosed.

If you join this community, you are not alone! There are many other parents and patients who have been through it and are eager to share their stories, insights, and encouragement.

All the best--feel free to private message me if you wish
Joanne

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Joanne in NY
LYNNDA

Date: Mon Jun 2 12:50 PM, 2008
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Joanne,
Thankyou for taking the time to reply.
I have since spoken to the Wellington Clinic in Dublin and they say the would be happy to see my son.
My worry would be though,that his bad eye deviates outwards and i wonder would this be a contra indication for crosslinking ,but i know no one can say for sure untill he is examined.

For the first time at the weekend i tried to talk to him about treatment but it his hard to get through to him that his wellbeing is more important than any doctors fees.It is hard at 16 to think about the future and to realise how things may be.

I am so glad to hear that your son's treatment has been a success.Hopefully you will have no more worries.

my children are going off on holiday soon with their dad so maybe just for a few weeks i should concentrate on that and give my head a rest !

We have another optical appt in August so at that point things can be talked about further and perhaps i can pusuade him to have a consultation.

It has been a help to write things down and i feel less alone with this.

lynnda



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Date: Wed Jun 4 6:44 PM, 2008
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I can also empathize about how stubborn a teenaged son can be! But investing in this treatment now can spare much future expense in terms of other treatments.

and, you are also right, you do need a rest. Coping with all of this, at the time of my son's diagnosis, caused all kinds of stress related physical problems for me, so please take care of yourself and rest a bit while the family is on holiday.

You are on the right track, stick with it.

Joanne

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Joanne in NY
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