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Post Info TOPIC: Crosslinking, epi-on, mom's blog


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Date: Wed Jun 13 8:54 AM, 2012
RE: Crosslinking, epi-on, mom's blog
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Isobel:

Thank you so much!! I cried and also felt a surge of relief reading your reply. Your knowledgeable reassurance means more than I can put into words.  I am very, very, grateful.

Yes, I am in the USA.  It is also wonderful to know that in Ireland crosslinking is both recognized and covered by most insurance.  This USA "clinical trial" status is disquieting.

While I have read and heard that the procedure is accepted in "Europe", it means much more to know that it is mainstream specifically at the Wellington Eye Clinic in Ireland where you work.

Yes, as a mother this is very difficult.  Your expertise and kind words make a big difference.

With a transatlantic hug,
Emily

 



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Date: Thu Jun 14 7:43 PM, 2012
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One week checkup - okay

Dan has just had his one week checkup.  There is no pain or discomfort in the treated eye. 

The doctor says that his vision tests are the same as before the procedure.  However, as I observed the eye chart reading, it seemed to me it was a little worse than before.  However, given what Isobel has said, I am not concerned with the small amount of extra blur that I perceived.

The plan is three more weeks of healing then on to contact lenses. He will be fitted for contact lenses by a KC specialist in  the city where he lives. I am hoping for a phone call in the not too distant future saying "Mom, I'm seeing much better !".    

Thank you for being here and responding to my posts.  For many of us, dealing with KC as a patient, parent or friend, is an intensely emotional experience, full of fear, grief, discouragement and hope.  The knowledge and support from members of this forum makes a huge difference to me.  I am deeply grateful.

Hopefully future posts from me will be encouraging.

Wishing all of you successful treatments, experienced or observed.

Emily_G

 

 



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Deb


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Date: Mon Jul 2 2:42 AM, 2012
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If he can get on with the contact lenses he needs, then thats just fantasic and long may it continue, but if it gets to the point where it is not "happening" for him, there is still options to try there-after if the cornea has not got to the point of no return for a less involved treatment.

Good luck Emily and Dan!

Debbie



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Deb


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Date: Mon Jul 2 3:16 AM, 2012
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How is your son doing now Emily ? has had further follow up appointments ?



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Date: Mon Jul 2 5:17 AM, 2012
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Deb - thank you for asking.  He's doing okay.  This coming week is the one month post CXL time and he can start getting fitted for contact lenses.  The CXL procedure seems to have left his vision with glasses the same as before. So, that is pretty normal. 

I found an optometrist who does a lot of KC fitting in the city where Dan lives and I have given him the phone number. 

It seems to me,  at this point, he has an excellent chance of getting improved vision with contact lenses. 

I keep imagining getting that phone call where he says, wow Mom, the lenses are working and I can see much better.

For now, all I can do is wait, wait, wait. Grrrr. But I am optimistic now.  As soon as there is some news about the contact lenses, I'll let you know.

I continue to appreciate your concern and helpful ideas. 

Also many thanks to all on this forum!  It is wonderful not to be alone struggling to deal with the problems of my child's rare and potentially destructive eye condition.

Waiting and hopeful,

Emily_G



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Date: Sun Jul 8 6:58 AM, 2012
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Deb

Thanks for the good wishes.  In eleven days Dan has his first contact lens fitting appointment. I'll let you know how it goes.  I am cautiously optimistic.

Emily



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Date: Mon Jul 9 10:02 AM, 2012
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Hi Emily,

Good luck with the contact lens fitting. What intrigues me is:

1)      Do they try the Keratocouns soft lens options first?

2)      Or, try RGPs first? (and if there are comfort issues, they then try soft lenses for KC, soft perms and so on…)

I think this varies a lot, and there are old and new schools of thought on this. Be sure to ask how they intent to manage this clinically, there are advantages and disadvantages for each contact lens option and in the fitting of them (i.e if they are going to fit steep or flat).

Best of Luck

Penny



-- Edited by Penny on Monday 9th of July 2012 10:03:09 AM

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Date: Wed Jul 18 3:08 PM, 2012
1st fitting for contact lenses after cxl
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Hi all.  Today is Dan's first fitting for contact lenses - after one eye epi-on crosslinking. 

I am nervous and excited.  This could be the beginning of a long and frustrating process with much trial and error.  Or, it could be easy and get a positive result in a reasonable amount of time. 

He is in his home city, so I will hear about it by phone later today.  What I did was find the optometrist.  This optometrist was recommended by the coordinator for the Crosslinking clinical trials study in the city where he lives. (reminder - here in the USA crosslinking is done only in clinical trials) 

Uncertainty, uncertainty - kerataconus companion.  I have done my best to be helpful.  How I hope it works!  

I'll let you know later how it goes today.

Emily

 



-- Edited by Emily_G on Wednesday 18th of July 2012 03:10:41 PM



-- Edited by Emily_G on Wednesday 18th of July 2012 09:14:02 PM



-- Edited by Emily_G on Wednesday 18th of July 2012 09:22:11 PM

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