My daughter Laney is 18 years old. Laney has Down syndrome and a few years ago was diagonosed with KC. Our local eye doctor decided to wait a year to see how the progression would be before he referred us to Iowa City. In that year Laney's KC progressed enough that he felt we needed to go on. Laney had been wearing glasses since 2nd grade, but the last several years really did not want to wear them. Looking back, I'm guessing the glasses were no longer helping and because our eye doctor didn't think Laney was a good candidate for contacts, he did not refer us sooner.
As soon as we arrived in Iowa City, our doctor there was very positive that Laney could wear contact leses. Her doctor wanted Laney to wear Boston sclerals right away, but the size and the fact Laney couldn't tolerate them made us switch to RGP's. We started out a little over a year ago with RGP's. These lenses were very uncomfortable for Laney, and required a few trips back and forth to get the right fit. But, we did find a pretty good fit and Laney could wear the lenses most of every day with drops inserted several times per day. Every few months we had to return to refit new lenses. Once Laney lost a lens at school and when a friend found it, it was stuck to the floor and broke when they tried to pick it up. Another downside was that wind bothered Laney a lot, she always wore sunglasses outside to try to keep the wind out. These lenses needed to be taken in and out quite often, as the comfort was not great.
Do understand, I insert and remove Laneys lenses myself, I clean and care for them. Laney can remove them if she has problems at school, but she also has a friend who I trained to help her in emergency. The RGP lenses were much easier for Laney to handle and she was almost at the point she could insert them herself. But, then we moved on....
A few months ago, when we were back at a recheck, we decided to try the Boston scleral lenses again. By now, Laney was more used to us messing with her eyes and we were able to insert the larger scleral lens just as easily as the RGP's. It is also easy to remove. For me that is, Laney still has not attempted to insert them, but she can remove it similarly to the RGP lens, if she has to. The friend that helps her at school, when she has irritation, uses the little plunger tool when she removes it. In that case they just put it away for the rest of the day.
Right now she is on her 3rd month with her left lens and we are still trying to find a good fit with the right. She has good and bad eye days with that one. On good days, she can wear the lenses from 12-15 hours per day. On bad days the right lens stays in the case. Wind is still an issue.
The neatest thing was the first time Laney had the lenses in her eyes and we were driving down the road and she noticed things that she never noticed before. No more sitting inches from the television and no more very strange looking funny faces that she made when she was trying to see. As uncomfortable as hard lenses can sometimes be, Laney prefers them over the not being able to see.
Her doctor in Iowa City has told us that Laney has a very healthy cornea, other than the KC, and may never need a transplant. I guess that if your loved one with Ds, can understand and cooperate, and there is someone, or a group of people, who are willing to put the time in, contacts lenses can work for some people with Down syndrome.
I am happy to talk to anyone interested about Laney and her condition and our experience so far.
beadle@netins.net
Lisa Beadle
CXL Procedure
CXL is a procedure that involves administering riboflavin and UVA in carefully selected parameters that strengthen the front layers of the cornea and avoid damage to the back of the eye.
