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Post Info TOPIC: 14 year old son with KC


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Posts: 15
Date: Sun Feb 26 11:07 AM, 2012
RE: 14 year old son with KC
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Hello Joanna,

I haven't been here for a while, but read your article and its amazing what you are trying to accomplish.  I agree crosslinking should be covered. I too have experienced the emotional ups and downs of my son's keratoconus first diagnosed 2 years ago.  He will be 17 this year.  We were told that the conservative approach was to try rigid permeable piggy backed lenses and in my opinion it made my son's keratoconus progress rapidly within three weeks.  For my son, the lenses were not only hard to put in but scratched his eyes and made them significantly dry and irritated.  I researched alot until I found crosslinking offered in Toronto who performed crosslinking on my son's eyes.  Fortunately his left eye was saved at 25/20 vision however his right eye was 200/400.  I had paid $5,000 at the time for both eyes.  Prior to this surgery I looked into my private group insurance and OHIP plus the Medical Secretariet of Ontario -- I ended up applying to the Financial Services Commisioner of Ontario in order to unlock funds to pay for my son's surgery.  We went for follow-up etc.  Our last follow-up was December 2011 for which his eyes are stable but his right eye still requires a corneal transplant as it is still the worst one as he has astigmatism and an unclear cornea.  Our surgeon did tell me that my son can have the transplant by laser now covered through OHIP in his office- hospitals offer a transplant using a scalpel covered by OHIP - longer recovery time.

May I ask what your son's vision was when first diagnosed and what is it now?  Also, do you have a forum for this plight for us Ontarians?

Sincerest regards,

Charmaine

 



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Charmaine
Deb


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Posts: 115
Date: Sun Feb 26 10:21 PM, 2012
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Joanne has thought of everything!smileKeratoconus Awareness Group of Ontario



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Posts: 22
Date: Mon Feb 27 3:01 AM, 2012
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Thanks Penny and Deb for posting our article and face book group. I hope you have joined!! I wrote the health minister again on this past Thursday. Apparently a study has been completed on Corneal Cross Linking and we just want to find out what the conclusion is. I may have to write our MPP and see if she can help get a response.
We were lucky that our doctor knew about Keratoconus. We did the corneal cross linking a month after diagnoses. Alex's eyes were 20/100 in the right and 20/50 in the left. The first 2 years after the surgery we had a lot of ups and downs. We had a six month recovery period, then moved to rigid lenses which was a 8 month long disaster. The rigid lenses did not work for him at all but Alex kept trying. After 8 months, he had enough and choose to squint to see instead of suffer anymore. At his 1 year appointment, his right eye was 20/60, and the left stayed the same. At the 2nd year follow up his eyes actually got a little worse at 20/70 in the right. There was talk of doing the surgery again in his right eye. Thankfully though at the 3 year appointment, he was 20/50 in the right and 20/20 in the left. We are so very thankful that he is improving and hopefully will continue to improve. Charmaine, I hope that your son will be okay. Corneal transplant is serious and we can be grateful that our government will cover the cost of that. You can concentrate on helping your son recover. Please let us know how things go. Feel free to join our support group on face book. You will find others with similar situations and their support will help you get through the bad days.
Sincerely,
Joanna

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Deb


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Posts: 115
Date: Tue Feb 28 10:24 AM, 2012
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It looks like you did Crosslinking just at the right time Joanna.

The age is a factor and I hope yours and Charmaines youngesters...once they are old enough...they can then be able to decide for themselfs, from the many options there are, once they are become 18-21.

Its a tough call to decide for someone else!

Charmaine, please do review the options, it might seem there arn't much, but what we have found is that it is a big wide world!

I was in contact with a parent whos 14 year old son had Keraflex and is doing very well ever since.

Take Care

Debby



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