All of us Vs Keratoconus


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Post Info TOPIC: KC Parent


Veteran Member

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Posts: 45
Date: Mon Feb 12 9:56 PM, 2007
RE: KC Parent
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He has never worn contacts. He hasn't even worn glasses since he was about nine. This is crashing on us so suddenly. He started squinting about a year ago, and resisted any suggestions to go get his eyes checked. In October, he finally agreed to go, and the optometrist suspected KC. A corneal specialist confirmed it.

He is about at the limit of being able to drive legally, that is our biggest worry. I am hoping that Dr. H in NJ can do something for him, either contacts or intacs or laser.  So far, my son seems to be taking all this in stride, but due to the fact that he has struggled with depression and hopelessness for at least five years, I worry that he will crumble under the strain of all this.


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Joanne in NY


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Date: Sat Feb 17 6:46 AM, 2007
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Hi

My Name is Simon.  I saw your recent post.  I have Keratoconus in both eyes.  I have been researching many many months on all the best options available for me.  I am 27 years old and a researcher by nature.

I visited 4 corneal specialist in the states and I was not satisfied with what they prescriped.  C3r and Intacs.  or contacts.

I have booked a trip to see Dr. Lombardi in Europe, but i am leaning towards working with a very special doctor in Syracuse.  I found her through months and months of digging around on the internet.  I hope you find her article usefull.  I met with her and talked with two of her patients.  One that had her surgery 10years ago and the other two months ago.  Both have nothing but great things to say. 

I hope this helps. 

http://www.nortoneyelaser.net/lores%2041108%20Newsletter%20(1).pdf

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Simon


Phase Two

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Posts: 482
Date: Sat Feb 17 9:31 AM, 2007
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Hi Simon, There are studies that show that laser thinning caused KC on Pub-med... with x linking before-hand it may hold water... but its too new to try... and Dr norton has had failures... but it was tried on people who wanted to try it before a transplant just in-case it worked.

Have a good trip, nice talking to you

-- Edited by QuintriX at 01:35, 2007-02-25

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Member

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Posts: 9
Date: Sun Nov 11 9:49 PM, 2007
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Hello to all

Just found this forum. My eleven year old son was diagnosed with KC in July. After alot of tests we found out that at the moment it is in one eye {his vision is about six inches] the other eye compensating. We are going to the hospital in the UK tomorrow to discuss INTACS. As you can imagine I am very worried. I don't know alot about KC, he had a topography done and it was very dark red for most of the picture. Our other option is a graft we find out tomorrow. Just a quick question Has anyone got any experience of INTACS or grafts in a child so young?

Kind Regards

Linda

UK

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Senior Member

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Posts: 124
Date: Mon Nov 12 2:38 AM, 2007
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No linda.No graft or intacs.Which doctor suggest you that?Do not stigmatize your child with a graft.PLEASE READ AND LEARN ABOUT COLLAGEN CROSSLINKING or else XLINKING.

You may have to come in Germany-Dresden or ask and find about Dr David Jory who is in England,london.

Please linda dont take quick decisions which are telling you at any hospital.

ASK AGAIN AND PERFORM TO YOUR CHILDREN EYES COLLAGEN CROSSLINKING.Its the best treatment we have for kc.

All other options,ARE NOT TREATMENTS.They just correct the refractive errors.Please find Dr David Jory which is close to you.Believe it is the best move you are going to do for your child

Especially grafts IS OUT OF QUESTION!!!!!!!

Please ask doctors which are updated to KC and NO hospitals which are dealing with other health problems.They simply dont have time and the knoweldge.

Find Dr. David Jory.Ask all the english people in here to tell you that.

Best Wishes







-- Edited by Zeus at 02:40, 2007-11-12

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nothing else matters


Member

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Posts: 9
Date: Mon Nov 12 2:09 PM, 2007
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Thank you for your time Zeus. We have just returned from the hospital. When we had our first appointment we were told that eventually a graft will be the only thing that will bring back his sight. We were also told we had an option to try INTACS. Having seen the consultant today we are now told that they are going to see if his vision will improve with a hard contact lens. They are very reluctant to try surgery because at eleven he is far too young for invasive surgery. At the moment the KC is not in his other eye. We have no family history of any eye problems and it is very rare to find KC in a child so young but not impossible. At the beginning we saw a consultant in the childrens department who gave us the information at the very worst. We are now under a consultant who specializes in KC and is going to try all options before the worst. Thank you for your time. I think I did panic a bit but the info we were given at the beginning was maybe because they did nt know alot about KC in children. I have hope for the future

Kind Regards

Linda

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Senior Member

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Posts: 124
Date: Mon Nov 12 6:29 PM, 2007
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Hello linda.No need to thank me.please i want to help you.

Please tell me at the topography of your son what is the KERATOMETRY READINGS?There is a scale which it has numbers such as 44-45-46 etc.

LISTEN LINDA if he is UNDER 57K it IS BETTER TO PERFORM COLLAGEN CROSSLINKING.

Have you asked your doctor about COLLAGEN CROSSLINKING?

Linda from the people i know here the BEST LONDON DOCTOR who SPECIALIZES IN KC IS DOCTOR DAVID JORY.

PLEASE ASK FOR A SECOND OPINION LINDA.You got nothing to lose.

Linda I THINK THATS THE FIRST THING YOUR SON MUST DO IS TO PERFORM COLLAGEN CROSSLINKING.Please visit a doctor who WILL explain the treatment.David Jory would be the ideal.

Linda dont think AT ALL ABOUT GRAFTS.ITS THE WORST CHOICE IF YOUR SON CAN PERFORM CROSSLINKING.

PLEASE FIND Dr David Jory IF you cant go to Germany-Dresdnen.There they have TREATED childs WITH KC.

Best Wishes








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Member

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Posts: 9
Date: Mon Nov 12 7:53 PM, 2007
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Thank you for the info on crosslinking. I will certainly take your advice and find out about it. I live about three hundred miles from London. The hospital I attend is the best in the area. However crosslinking was never mentioned so for your info I am very grateful and will certainly take it on board. When he had the topography done the number at the top was 77%. I seem to remember the number 47 mentioned. From a layman point of view his bad eye was very dark red and his good eye yellow and green. It is very good to know that I can talk to someone who can answer questions that I seem to forget when I am at the hospital.

Kind regards

Linda

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