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Post Info TOPIC: KC Parent


Member

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Date: Thu May 12 11:28 PM, 2005
KC Parent
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Hello


 


Being a parent of a KC sufferer I wanted to see if there was anyone else here whose child has KC?


 


Also, is there a list of lenses a child could try to cope with KC?


 


KCP - Jane



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Anonymous

Date: Fri May 13 11:09 AM, 2005
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Hi KCP....Welcome to the site, Good questions! So good that its created its own section!....lol....There are other parents that visits us... I am sure in time you will become the best of friends.


About the lenses...personally I have not got enough experiance to answer your question fully....there are eye care specialists that visit us who know more on the subject or if you PM me I will put you in touch with people who would be able to help you out. What I am excited about is wavefront technology....built in to glasss's and contacts....so that the prescription fits the cornea like a hand fits in to a glove...


I think it will be benifical for many... With the wavefront glasses the better vision may not be much but would be enough to many to give just enough better and more comfortable vision than they are getting now with their regular glasses ...which is something to look forward to... For example "SAM" technology makes vision better for even people with-out KC, check through the sections on the site below...


 Please Click Here


A tailor made solution for the individual is something to be welcomed I think... Anyway all the best...


BTW...if you wondering, this site is a bit like when you are stuck on a desert island and you throw a message in a bottel out to sea (well the sea being the net this time....lol) for someone to find it... and I am glad to say that it is being read by the best Doctors in the KC world...so I thank you for finding us



-- Edited by QuintriX at 10:04, 2005-07-23

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Date: Tue May 17 4:42 PM, 2005
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Hi


 


Many thanks for the section as I was lost where my post went!! HAHAHA...only just found it!


 


Yes it is difficult coping being a parent of a KC sufferer especially if the child is young as in my case.....as seeing them go through the pain of the condition is heart wrenching!



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Anonymous

Date: Thu May 19 3:25 PM, 2005
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Personally I think it must be hard to watch someone suffer than being a sufferer yourself...its hard enough to judge what is best for one self with out having to decide for some one else...


From a personal perspective I just could not take hearing about the various problems people was having with there KC...all those posts and stories really did get to me...thats why I wanted to take a fresh look at things...and start a "Genisis Programme"...


In many ways I wanted to get the "ball rolling" for our childrens future as they are the future!


Anyway we will pick up and carry people...if the need arises...so don't worry as thats what we are here for...to worry on your behalf...


All the best 



-- Edited by QuintriX at 10:05, 2005-07-23

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Date: Sat Jun 11 10:35 AM, 2005
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Hi KC parent,
I am also a KC parent of a 14 year old who was recently diagnosed. After taking him on the rounds of doctors, we decided to get the cross-linking procedure done and hope that it has stopped the progression.
One of the worst moments for me was when our opthomologist sat me down and explained what keratoconus was and how there was no "cure", and that it is progressive. I just looked at my son, who was one week shy of his 14th birthday, and thought - if I fall apart, he will too. It took every ounce of stength to sit there without breaking down, and try to grasp what the opthomologist was saying. I wanted to go into denial so badly (to think: oh, he's wrong, doesn't know what he's talking about, it's a misdiagnosis - he just has lazy eye) but knew if I did that I wouldn't be able to help my son get any kind of treatment he really needed.

Then when I went to the internet to learn all I could about it and to find A CURE, the more I read, the sicker I felt. I was physically nauseous reading about the difficulties with KC - the problems with hard contact lenses - the real only treatment for it. Reading about people who were trapped in their homes because they could no longer see the fine details needed to "get by" in life, or reading about corneal transplants that didn't go so well - let's just say, if it weren't my son who was going through this, I would have turned off my computer and gone to bed for a week!

Another difficulty was trying to get my husband to understand what was going on. His grasp of the English language is OK, but not good enough to read the articles I was printing out and saving for my KC "file". I tried to explain things to him, but he either didn't understand what I was explaining, or his mind just shut down when the subject came up. At one point, when our corneal expert told us our son would not go blind, my husband was immensely relieved. I explained to him afterwards, in private, that yes, technically he wouldn't be considered "blind" but KC'ers call it "blind with light". In other words, in the worst case scenario, he would see, but only objects, not the details. Even when we took our son for the cross linking - when we arrived in LA, my husband turned to me and said: "So, how long will it take to see an improvement in his vision?" I couldn't believe that after explaining what the procedure would do (halt the progression), he asked me that!

So I felt rather alone in all of this. At one point, not too long after his diagnosis, our son came to me and said he felt things would be OK after all. When I asked why, he said because he realized how much support he was getting from us both and from his grandmother and grandfather in the States. I just wanted to cry when he said that! I hugged him and told him that made me feel so much better, and that he should know, he couldn't have a better parent in the world since I'm a whiz at research - and if there is something that can help him out there, I'll find it!

So while everyone in my family was happily in denial (my favorite pastime, but I wasn't able to indulge this time) I was busy doing my homework. When we decided to go to LA to get this treatment, my son was more excited about going to Disneyland than getting help for his eyes! He asked me over 50 times if for sure we'd get to go to Disneyland. Only when we arrived and a few days passed, did he ask me what the treatment involved, and if it would hurt. We had already discussed the treatment and he insisted on not having anything invasive (intacts).
Fortunately, he didn't suffer any side effects from the treatment whatsoever (except excessive nagging from me to lie still on the bed afterwards and to close his eyes).

We will be going for our first appointment of many to get soft contact lenses - an option we didn't have before the cross linking treatment. Dr. Boxer Wachler told us he could get the Hydrosoft XW CTL Preference Toric XR. I haven't read up enough on all the different lenses, but since I trust Dr. Boxer Wachler, I will just pass that information on to the contact lense specialist here.

How old is your child? How long have you known he or she has had it?

I'll keep you informed as to our son's progress. Please let me know what steps you are taking too.

Dina



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Dina Golan


Executive

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Date: Fri Jul 22 9:58 PM, 2005
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Hi Dina,


Just checking in to see how your son is progressing... Things really seem to be getting interesting here in Europe regarding cross-linking. I hope you have been keeping up with Valeri's excelent first hand accounts and (our intripid reporter) Sajeev's information gathering... they really make for exciting reading.


Also KCparent we havn't heard from you for a while... please let us know how you are progressing with your childs KC... Keratoconus is not a disease to be suffered alone. It really isnt all gloom and doom, its just a case of being on top of all the information available. And asking for help when you need it.


Best regards,


Hari


 



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Veteran Member

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Date: Mon Feb 12 2:43 AM, 2007
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I too am a KC Parent. my 22 year old son was diagnosed in october of 2006.  I actually had him scheduled with boxer wachler for crosslinking at the end of this month, but two weeks ago, I was told the treatment was suspended at the request of the manufacturer of the equipment so they could "take it to the next level." The woman at Boxer Wachler's clinic would tell me nothing more.

I took my son to the only doctor locally who prescribes wavefront lenses, and he said that they would not help. Nor would he fit him for contacts as he says the left cornea is too scarred and the right cornea should have intacs first. I feel like we keep getting hope pulled out of our hands every time we get close to something that could help.

My son has been struggling for five years to overcome serious major depression, and he is almost well enough to resume his life. Now he has this to cope with. I don't think he will be able to get back to college until his vision is fixed somehow. What if nothing works? Will he ever make it to some sort of independent adulthood?

I am so downcast and frightened right now I can barely keep from shaking.

Our next appointment is with a corneal specialist who may be able to do PTK on the scarred left cone and intacs in the right eye. We go there for an evaluation in a week or so. I am trying not to get my hopes up again. I do think I will break down if this Dr. says we must consider a transplant.

Jo
NY

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Joanne in NY


Senior Member

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Date: Mon Feb 12 8:14 AM, 2007
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Hello Jo,

Welcome to the forum.

From what I understand there is a difference in the methods being used by Boxer-Wachler and the European Doctors(who would appear to be the only ones who have published any studies on cross linking), so in that regard, prehaps "taking it to the next level" is bringing it in line with the European methodology. I

Has your son previously been wearing contacts or was this his first attempt to get fitted? Was there any mention of trying synergeyes or scleral lenses? 


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