GENETIC CLEARANCE!!!!

We just found out today that all of our family, with the exception of Gracie, have received genetic clearance for the RB1 mutation! Meaning that no one but Gracie carries a mutation on their RB1 gene! So our kids can now stop doing exams under anesthesia every 3 - 6 months. This means that all cousins are also cleared of a genetic risk and don't even need to get their own genetic testing done. 

However all children still need to continue to do routine eye screening. It's easy, in infancy children need their eyes dilated and examined, this can be done by an optometrist. It's painless and quick. The guidelines set by the Canadian Association of Optometrists is to have the eyes examined:

1. First visit at 6 months

2. Second visit by 3 years

3. Before the first day of school

4. Every year thereafter

Of course if you have any concerns in between SEE YOUR DOCTOR!!!

There are lots of potential problems that can be identified through these exams. Cancer is the least common.  Most of them are very treatable, if not reversable. 

There is a program promoting early vision screening in infants in the United States called InfantSEE to learn more about it check out their website:

http://www.infantsee.org/x3423.xml

InfantSEE recommends eye exams by an optometrist at 6 months, 2 years and 4 years. They are trying to encourage pediatricians to recommend these exams by optometrists.  Now I know that InfantSEE is run by the American Optometric Association, but it's also thoroughly endorsed by ME! A mother whose dealt with this. The eyes are dilated and the retina is thoroughly examined in these exams. Get it done!!! Gracie is a sporadic case, 90% of RB cases are! It's rare, but it still happens. Almost all cases of RB, where there is known family history, are diagnosed in stories almost exactly like Gracie's - when the cancer has grown so much that it is actually visible through the pupil. If it was diagnosed earlier than the impact it would have on their vision would be significantly less. More eyes and lives would be saved.

 The InfantSEE site has a doctor finder on it, so you can find an experienced provider who is close to you. 

!!!!GET YOUR KIDS EYES DILATED AND EXAMINED!!!!

Stephanie