NOAH AOC

 Hello everyone! 

Its been awhile since my last post but I have another delima and need your help.  We just took our twins, now 21-months who have OCA2, to their 6-month follow up with the PO.  Good news all around, which was great to hear.  However, this was our 4th appointment with him, and each time we go to him he writes us a script for glasses with no correction in the lenses, just the transition treatment to the lens so they turn dark when in direct sunlight in order to protect their photophobia.  (We put hats and sunglasses on every time they go outside, and I had just told him that, but he suggested these again.)  He keeps saying that there is research that people with albinism can actually get damage to the eyes through repeated sun exposure, so he wants the kids to wear glasses all the time, even though they don't need any correction (right now) just so that they turn in to sunglasses when they go outside.  I completely understand the damage part...I just don't get why we need these "fancy sunglasses" that he's suggesting.  We are already using sunglasses every time they are outside.  But, there's that little paranoid-mommy voice in the back of my head saying "But the doctor said we have to do this...we really should...despite the fact that it would be $350 per kid".  (Anyone else have that little voice???)  

 SOOO...my question to you all is this.  Has anyone else been told that they need to do this, or heard any more info about the exposure and the damaging effects to the eyes (as far as how much it takes to cause damage or they best prevention)?  Obviously, we're going to do whatever we need to do to avoid damage, but I kind of feel like we're already doing it.  Know what I mean?  Okay, hope this all makes sense...

 Thanks!!!

Hi

We have a four year old daughter Gillian who has Albinism.  We made the mistake of getting transition lenses when she was around a year (she did have a correction prescription), and they were useless.  They did not get dark enough for her.  We just recently got new glasses with a new prescription and opted not to get transition (although we did do a tint to help with inside glare).  Her ped opthamologist agreed, for her they would be useless. 

I would say it would depend on the level of photophobia.  I think it makes sense that they are more susceptible to sun damage to the eyes, but I would guess that a good pair of sunglasses and consistently wearing them outside is fine.  I don't think the transistion lenses do anything more then the sunglasses.

Kelly

 Our kids are 3 and 4 1/2 and both have transition lenses.  They love them.  They need the glasses for correction.  It saves keeping track of two pairs of glasses, they darken at times I didn't realize it was so bright (cloudy days, inside near windows, etc)  It also helps with daycare - the teachers only have to remember sunscreen and hats - not sunglasses as well.  We do have rx sunglasses for the pool, beach and all day outside activities. 

Chris

Zachary has transition lenses, but only because he is farsighted with astigmatism and needs glasses for the correction.  If the PO did not write a script for any correction, I would not spend the money on transition lenses.  Seems like awfully expensive sunglasses that will not get dark enough for them in the car, etc.  Also, as for people with albinism being more susceptible to eye damage from the sun, I think that's bologna.  I've never read or heard this.  Everybody, including those of us with "normal" pigment, are susceptible to damage to our eyes from the sun, that is why sunglasses are recommended for everyone.  Just my two cents!

I agree with everyone else.  Zachary (now 4) has had prescription glasses since he was 4 months old.  We purchase the glasses through the doctor and then buy him sunglasses from Wal-Mart for $5.00.  I have about 5 pair of sunglasses since so I can be sure that he has a pair at school, in my purse etc....

This past September, I did purchase transition glasses and I am VERY disappointed.  They don't darken fast enough and hardly ever get dark enough for him.  He is photophobic--but I would say a mild case--he can actually tolerate the sun fairly well.  I only really see them transition on cloudy days to the degree where he can wear them.  On sunny, bright days, he needs those sunglasses from Wal-Mart.  Also, the sun comes in through the side of his transitions and he complains about that.  The Wal-Mart sunglasses cover the sides of his face and actually protect him much better. 

Yes, I do switch glasses (when we get inside I take off the sunglasses and put on his regular glasses), but he does that on his own COMPLETELY at school.  I bought him a race car glass case and keep it in the same place in his backpack.  When he gets to school, he switches them out.  When he goes out for recess, he does the routine.  Also, his teacher is very good about taking his sunglasses/glasses on field trips so we never have a problem there.  His transitions also came with a set of clip ons (much darker), but is doesn't solve the sun coming in on the side--so we don't use them.

The transitions cost me about 100.00 and my insurance paid for the frames and lens.  I am still deciding if I want transitions again next time he gets new lenses--probably not if the price goes up.

I have told the doctor this is what I do and he has never said anything about it---he says OK.  In my opinion, they are a waste of money.

Jo