Moderator said on 11/09/2009 at 5:05 pm
esteban222 said on 10 August:
thanks for your information. matthew(youngest son) wears sport goggles(made by recspecs) as his glasses. one side is clear lens and the other is a Rx lens. at first the hated them, but now he wears them without any fuss. it is important to protect his good eye.
Moderator said on 11/09/2009 at 5:05 pm
lconstante said on 10 September:
Hi everybody. I have just registered. Excuse my english (I'm from Brazil).
I also have xlrs, and would like to discuss the trial treatments that are showing around:
- use of dorzolamide;
- gene therapy with AAV (RS1);
- vitreous surgery for schisis collapse.
I have talked to many doctors but I have more results searching +xlrs in scholar.google.com.
Well, good to be here. Good afternoon for you all (is this correct?).
Moderator said on 11/09/2009 at 5:04 pm
Tricia51 said on 29 August 2009:
Hi Esteban 222,
I'm very pleased that things are working out better than you first thought. I know that this situation is taking over your life right now, but it will get better. Remember Matthew is the only one who knows what or how he can see, regardless of what the specialists say. Children adapt and cope very well. When us adults had eye drops and were tested, we all moaned about how much they hurt,and what bad headaches we had. The nurse called us wimps. Children are stronger. We never had contact with anyone who had xljrs, until this site. Everything was trial and error. Please keep in touch
Best wishes,
Pat
Moderator said on 11/09/2009 at 5:03 pm
esteban222 said on 26 August 2009:
my boys had a fluorescein angiogram a couple of weeks ago. matthew(who has xljrs) study looks good and the oldest(zachary) shows no sign of xljrs.
Moderator said on 11/09/2009 at 5:03 pm
Tricia51 said on 13 August 2009:
Hi,
When Callum was a baby he had a patch on his good eye for a certain time a day,but it was quite distressing as he couldn't see anything.Moving his head around and not being able to see.It is supposed to be helpful,if you can persevere.I believe that if the eye is not forced like this , the brain switches off from it.This summer school hols Callum has been cycling to the swimming baths,about 10 mins.on his own.He is told which route to go, and keep to the pavements not the road.We have never treated him as an impaired child. Sometimes I forget and say 'Look at that' I get back 'You know I can't see that Nana' When he was first toddling around, we had some childs sunglasses, which he came in for himself,when the sun was very bright,as they were very trendy.I'm sure things will settle down for you in time.
Take care,
Pat
Moderator said on 11/09/2009 at 4:58 pm
esteban222 said on 13 August 2009:
as part of matthew's therapy, we cover this good eye with a patch for 2-3 hours a day. the doctor indicated this would make his weak eye get stronger. he has been doing this for over a year.