NOAH AOC

Hello my name is esen. My son Candan and I live in istanbul. I have been reading all your posts for over a year now and yet have not had the courage to write. I have had great comfort in reading all your posts. there were so many questions I had in mind but can only think of a few for now.

My son who is nearly 16 months old, is beginning to show signs of a lazy eye on his left eye like I had when I was a child. My mother corrected my lazy eye by patching the stronger eye. I have bought childs size eye patches for my son and used it twice. Each time for 15 minutes.

The question I have is how long is too long for him to be wearing the patch. I don't want to over strain his eye. My research on the internet states that children under 4 years of age should have their eye patched less than 4 hours a day but does not state how long for toddlers.

 I feel that we have to be extra careful not to over work our children's eyes especially if they have nystagmatism. Does anyone have experience with patching their child's eye? for how long, what age and any certain exercising that may help?


Thank you and have a happy new year!

Esen

ps. how can I  attach photos to the end of my post?

welcome to NOAH... glad ya decided to 'join' us ;-)

I would ask his Pediatric Opthamologist (sp?)  about the patching.  I think it vary's.  My friend's little boy who also has OCA (like my son) has to wear his patch 2 hrs a day.. he is one.   

Good luck

OH... and create a free account for your photo's at

photobucket.com

BE SURE YOU USE THE IMG CODE to insert into your posts or signature.

Hi all! My name is Amy and my daughter's name is Cassidy.  My daughter is 10 months old and has been diagnosed with ocular albinism.  I found this website shortly after her diagnosis about 7 months ago.  Thank you so much to all of you for your insightful conversations and posts!! My husband and I were so surprised and caught off guard with Cassie's diagnosis that we were pretty lost for a while. This website has been so helpful to me during a very difficult time.  I feel so blessed to have Cassie in my life and I know that there will be hurdles to overcome but she is already surprising us!! I just wanted to wish everyone a very happy and healthy new year and give my many thanks to everyone for all the positive and encouraging messages I have been reading these last months.

Amy 

Welcome Esen and Amy!

My son just turned 4 and we think he has OCA1B because he has gained some pigment since he was born.  He first developed nystagmus around 7 weeks and his pediatrician noticed it at his two month check up.  We then saw a pediatric ophthalmologist who confirmed the diagnosis of albinism.  Like I tell all new parents I talk to, you will be amazed at your children and their abilities.  Their eyesight may just not be as good as some, and they will need susncreen for their fair skin and sunglasses/hats for the light sensitivity.  Other than that, Zachary is completely "normal."

With regard to patching, we just had this discussion in another thread.  You may want to try a search for patching and see what other threads come up.  My son also has a lazy eye, and when he was about 1 the doctor wanted to start patching him.  Because Zach wouldn't keep the patch on, we switched to Atropine drops which blur the vision in the good eye for several hours so that he will choose to use his weaker eye and thereby strengthen it.  The frequency of which we have used the drops has varied in the last couple years, depending on how much worse the vision is in his bad eye than his good eye.  Right now we only use it once a week.  I would definitely defer to a pediatric ophthalmologist for advice on when and for how long to use the patch, though every one of them may tell you somehting different and have their own opinion.  Esen, I don't know if you have any pediatric ophthalmologists in your area, but I would try and see one of them for their advice if you haven't already.

Welcome to NOAH, and never be afraid to post your questions/concerns/successes.  We are all in the same boat, just at different places in our journeys as parents of children with albinism.

Hi Esen -

Welcome to this forum. I too am a Turkish woman from Istanbul but have been living in New York for over 9 years. I have albinism. Please ask if you have any questions.