All of us Vs Keratoconus


Members Login
Chatbox
Please log in to join the chat!
Post Info TOPIC: 14 year old son with KC


Member

Status: Offline
Posts: 22
Date: Tue Nov 10 11:34 PM, 2009
RE: 14 year old son with KC
Permalink   
 


Thanks for the info Zenke... That type of contact hasn't been offered to us yet.  One thing our dr. did recomend was to piggy back the contacts, so that he puts on a soft contact first then puts the rigid lens on top.  People have said this is more comfortable but its not for all.  We haven't tried this yet but we may.  I'm waiting for Alex to be willing to give it a far try.
All the best,
Joanna

__________________


Executive

Status: Offline
Posts: 152
Date: Wed Nov 11 8:36 PM, 2009
Permalink   
 

Great posts ! Joanna and Zenke, but sorry to hear about the "so close yet so far" experience with contact lenses. (which is very common and felt by all of us at some stage, sometimes for years, but we do not wish that to be the case no more)

Further to Zenkes post:

Watch the video's at this site http://www.so2clear.com/

The makers in the states are http://www.soclearlens.com/

For a tailored custom fit matched to an individual corneal profile, contact http://www.hollandsoflondon.com/

Best regards, Remo



-- Edited by Remo on Wednesday 11th of November 2009 08:39:00 PM

__________________


Senior Member

Status: Offline
Posts: 113
Date: Thu Nov 12 11:05 AM, 2009
Permalink   
 

hello joanna.have u tried out the synergeyes hybrid leens?
will give your son the vision of an rgp with the comfort of a soft lens.also they alow much oxygen to the cornea.they are a little trick to get in at first because you have to have fluid in the lens and i was taught to pit them in with the small suction cup.however i did not even feel them in and wear times were unbelievable and removal from the eye was very easy.


__________________


Member

Status: Offline
Posts: 22
Date: Fri Nov 13 12:25 AM, 2009
Permalink   
 

Hi There,
We have gone to two doctors for lenses and they both didn't recommed the hybrid lens.  Im not sure if it because of his age or what.  They are expensive too but both doctors say for us to keep working on the rigid lens for now.  If we have too, I will go to another doctor until we can have this corrected.  His vision is pretty bad with out the lenses.
Thanks for the feed back.
Joanna



__________________


Senior Member

Status: Offline
Posts: 113
Date: Fri Nov 13 2:46 AM, 2009
Permalink   
 

also if u live in the toronto aread,i can send u to my optician and you can get grant from government of 525 a year for vision aid due to the keratoconus.I just got this yesterday,i was never informed of it before.just private message me and i will send u info.he is also a great lens fitter and the fastest i have ever seen.usually lenses are in by next day so fittings are vert fast.I only had to put 40 doallars in for my lenses until i got sent to the other doc for the signature to be granted. take care...dom

__________________


Member

Status: Offline
Posts: 22
Date: Sat Feb 27 3:16 AM, 2010
Permalink   
 

I know it has been a while since I have posted...sometimes I just don't want to talk about it.  Alex gave up on using the hard lenses.  It was too difficult and painful for him.  I don't blame him...every morning was a battle and within minutes his eyes became blood shot and swollen.  Now he is adjusting to coping with what he has left.  I think the doctor said he was 20/30 in the left and 20/400 in the right so obviously he is using his left eye more and he squints to see.  He is learning to realize that this is as good as it gets...and most days he is okay with that. Some of his close friends have nicknamed him"Squints," and he is okay with that too. We had our one year post surgery appointment recently and so far the progression has stopped.  We are very happy with that.  We are going back to the Bochner Institute in July with our younger son to see if he is showing signs of this disease.  We pray that his eyes will be fine...
Thanks to everyone for their advise on contacts.  Although his vision did improve with wearing them, it just wasn't worth the pain.

__________________


Member

Status: Offline
Posts: 15
Date: Fri Nov 26 1:46 AM, 2010
Permalink   
 

Hello Joanna,

I wanted to know the status of your son`s eyes because my 15 year old is coming up to his one year anniversary of when he was diagnosed with keratoconus in both eyes. He had crosslinking done to both eyes but his right one is still the worse one (they keep telling me to get a graft). He doesn't wear contacts (I am skeptical as we tried them in the past and all they did was cause him to rub his eyes more -- this was before the CXL)

The crosslinking worked to stop the keratoconus, but crosslinking to my understanding doesn't last forever. I am looking into the microwave procedure offered through Avedro however it seems they are still doing clinical trials in Europe. Boy are we slow in Canada. Ideally, I would like me son to get his right eye microwaved and then CXL to hold the decrease in corneal bulge.

Do you live in Ontario? How have you made out with the government? I had to apply to the Financial Services Commissioner to unlock my retirement funds for my son's eyes as our healthcare system as you know doesn't fund CXL. My insurance through work wouldn't pay for it either.

I noticed like me you haven't been on here in a while. I look forward to hearing from you soon.

Sincerely,
Charmaine

__________________
Charmaine


Member

Status: Offline
Posts: 22
Date: Tue Nov 30 11:28 PM, 2010
Permalink   
 

Hi Charmaine,
We had our 2 year follow up in July with both our sons, and they are doing good.  Michael is still not showing sign of the disease and Alex has not progressed any further.  We do live in Canada, Brampton, actually. Alex was the 130th patient to have the cross linking at the Bochner. He is not wearing contacts as they caused him too much pain.  He does struggle all the time but is making the best out of what sight he has left.

I am still writing letters to our government.  I have met with our area MP and MPP.  Progress is very slow, as far as that goes.  I am looking into getting media attention now, starting with the Brampton Guardian.  It sure is hard finding the key to get some kind of financial help for other families with this disease.  It really is depressing to experience the fight for rights of our children. I feel pain when I see my son struggle to see, and his disease has been stopped.  What do other parents feel when they can't afford the cross linking procedure?  I started a face book support group called "Keratoconus Awareness Group of Ontario"  If you are on Facebook, I would love for you to join.  Our members are there for support and also to see what to do, who to write and what progress has been made.

I hope your son is coping with this disease.  Please feel free to get in touch with me anytime.  We all need the support!!

__________________
«First  <  1 2 3 4  >  Last»  | Page of 4  sorted by
 
Quick Reply

Please log in to post quick replies.

Post to Digg Post to Del.icio.us

www.kcfreedom.org

Knowledge Works