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Post Info TOPIC: 14 year old son with KC


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Date: Mon Jan 12 7:56 PM, 2009
14 year old son with KC
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Our 14 year old son is recovering from his first C3R procedure on his worst eye. He had it done Dec 11/08. Going through this process was not to bad and almost pain free. Now he is getting frustrated because of the haze that he has in that eye plus the damage that the disease has done. His next surgery is scheduled for Jan 29/09 and we are worried of how he will react with both eyes not being in the greatest shape. Is there anyone that has gone through this with their teen son or daughter and how did you deal with it. I told him of this website and sent him the link but I don't think he will go on. If there are any teenagers who have any advice, that would be great.
Joanna

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Date: Tue Jan 13 2:05 PM, 2009
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The hardest thing for both of us (I'm my younger sister's guardian, she had crosslinking) was to be patient with the healing process. It also seemed like some days were better than others, with fluctuations in vision. I think I even called the doctor's office sometime during week 3, but they told me we needed to give everything time to clear.

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Date: Mon Jan 19 1:57 AM, 2009
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Hi Joanna,

My son was the same age when we had x-linking done.  We had both eyes done at once, though, and were lucky in that there was no real problem with haze.  The haze that was visible to the ophtomalogist took a very long time to clear, but was never bad enough to cause vision problems.

In all, I think he only missed two weeks of school.

Our biggest problem was light sensitivity, which was quite bad at first and took some time to go away altogether.  But, he's a tough kid and soldiered through it all.

Two years later, he is near 20/20 in his good eye, but we are having some issues with the eye.  Still, this is infinitely better than where we might have ended up.

So, it all went relatively smoothly for us, and I'm hoping that it doesn't cause your soon a lot of difficulty, either.

At 14, it can be a little hard to take the long view, but I think that's what you should try to iimpress on him.  This condition can have some rather poor outcomes, and x-linking really does seem to prevent a lot of grief.

And, he's not alone.  Many other children his age have had the same procedure now and all manage to get through it.

By the way, we are also Canadian.  When we had it done. we had to travel to Germany, as it was not being performed here.  Are you having it done in Toronto, or somewhere else?

All the very best of luck to you both!

-Gary

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Date: Tue Jan 20 11:59 PM, 2009
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Hi Gary,
We were lucky to find the cross linking procedure being done at The Bochner Eye Institute in Toronto. We decided to do one eye at a time because of school and exams. Our son Alex had the right eye done Dec 11. This is his worst eye. He has more damage in this eye and he still has difficulty with the hazeiness. He is also dealing with headaches lately probably due to squinting. His left eye still seems pretty strong. We are doing that surgery next week Thursday after exams. He will miss two weeks of the next semester but I have been in touch with the school to get help there.
I am so glad to hear that your son is doing well. That is very encouraging to hear. I keep reminding Alex to be patient and that we have stopped the disease. We can correct his vision with a rigid lens in about 4 months so that will be the icing on the cake to this story. Did anyone else from your family suffer from KC? Alex is the first on both sides of the family that we can find out about so far.
Thanks again for your kind words. I will print your email and keep it in my binder of information that I have collected for days when we feel frustrated!

Smiles,
Joanna

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Date: Tue Apr 14 3:26 PM, 2009
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So I just wanted to update on Alex and his progress with everything. Both surgeries went well and as expected. The most complaints were with the multiple visions and the haze issue. March 26th we went back to the Bochner for a check up and the dr. was very happy with his healing. He also said we can get Alex the rigid lenses to help clear his vision. We went the following week to get him measured for that. Last week Alex tried on the lens and after letting it settle, he could see 20/20!!! This is amazing news since without the lenses he sees 20/80 with the right and 20/30 with the left. The disease damaged his eyes alot but having the C3R, we know that the disease is stopped and his vision will not get worse. Alex will have to adjust to the rigid lenses but knowing that he will see 20/20 will encourage him to keep at it. For all of you who are wondering what to do, this is our story and we are very happy that we decided to go with the crosslinking. This has been a stressful, scary experience but when Alex could see the letters at the dr. office, we were very excited and have a new outlook on his vision problems. Good luck to everyone.
Joannasmile.gif

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Executive

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Date: Tue Apr 14 9:28 PM, 2009
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Great News, very happy for you, please come back when possible to update us and also to give some support to others like your self, that way those you have helped will help others and so on...

Best of luck, don't forget there are these days may tried a tested and new contact lenses for KC to better handle KC, if thats ever needed.

Remo

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Date: Tue Nov 10 2:53 AM, 2009
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Hi... So I just wanted to update about Alex and his fight for sight.  Tomorrow marks a year when we first found out that he had KC and this morning I was once again crying my way into work!!  A year of watching your child suffer....a year of struggling to have his sight corrected with surgery and rigid lenses...a year of writing letters to various members of the Canadian Government for help.  So since the last time I wrote in here, we were in the beginning stages of using rigid lenses.  Its been six months and Alex still has trouble with them.  Every morning I worry if they are going to go in or not.  I try to make myself busy in the Kitchen while he is setting himself up in the dining room.  Some days they go in easily and we have no problem. Other days, like today, he has problems.  Today the contact moved to the side of his eye and panic began.  Its bad enough that we have to some how get the lens back onto the cornea, but we also have to do it without scratching his eye. We have taken him to several doctors and they all tell us that Alex` eyes tear up very quickly which give him a harder time for putting them in.  The tearing up also causes his eyes to become dry which also causes discomfort.  By the end of the day of wearing them, his eyes are red and swollen.  On the positive note, with them in, he can see 20 20.  Without them, he can see if he squints.  Today Alex went to school without them in, so another frustrating day...but we are coping.  I wish for some quick help with these lenses but I know that this is strickly Alex`fight.  We can only be there to support him and encourage him to keep going.  I know that there are other parents out there who are suffering like us.  I am thankful for this website and I come here often, especially on my bad days.  Now I am taking out my frustrations on the government to fight for financial help for the cross linking surgery.  This at least makes me angry about the disease instead of sad for my son and other children who are suffering. 
Thanks for being here,
Joanna

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Date: Tue Nov 10 7:41 PM, 2009
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Hi have you checked the option of semi scleral RGP lenses, I am trying to convince my optician to try them for my RGP lens eye, since they seem to be more comfortable to wear than smaller rgp lenses. (they split the pressure on larger area and the white part of the eye).

Some info seems to be interesting.

http://www.soclearlens.com/images/pdf/BeyondTheLimbus.pdf

http://thesclerallenscenter.com/wp-content/uploads/2009/04/you-can-manage-irregular-corneas.pdf

If you can get up to the same vision acuity with much better comfort it would be very nice for him.

BR Henrik

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