February 2016 Moms
blueberrymomma
member
Options
Albinism
blueberrymomma
member
So at Camdens 2 month appointment the doctor noticed he has nystagmus in his eyes and referred is to an ophthalmologist
Well after 2 hours of having eyes dilated and shinning lights in his poop sensitive eyes ophthalmologist said he didn't have any vision problems but the color of his optic nerve and his skin and hair coloration indicates albinism (aka albino). She said she was 90% sure but wanted to retest his eyes in 3 months and put in a referral to genetic testing. Then the next day our primary doctor called and wanted to refer DD to genetic testing as well since she has the same coloration. Some of you probably already know my kids have white hair, white eyelashes, white eyebrows, and are very fair skinned.
Whats nerve racking is waiting; three months for eye testing, and up to 6 months for genetic testing before I get any answers. Also DD will be 3 in June and no doctors have mentioned this before
I just needed to get this out of my system before I burst
Heres some pics of my kids. I knew they were fair but I didn't think they were albino.
DD with aunt
DD with her cousins
DS in some sunshine
DS last night
Well after 2 hours of having eyes dilated and shinning lights in his poop sensitive eyes ophthalmologist said he didn't have any vision problems but the color of his optic nerve and his skin and hair coloration indicates albinism (aka albino). She said she was 90% sure but wanted to retest his eyes in 3 months and put in a referral to genetic testing. Then the next day our primary doctor called and wanted to refer DD to genetic testing as well since she has the same coloration. Some of you probably already know my kids have white hair, white eyelashes, white eyebrows, and are very fair skinned.
Whats nerve racking is waiting; three months for eye testing, and up to 6 months for genetic testing before I get any answers. Also DD will be 3 in June and no doctors have mentioned this before
I just needed to get this out of my system before I burst
Heres some pics of my kids. I knew they were fair but I didn't think they were albino.
DD with aunt
DD with her cousins
DS in some sunshine DS last night
Re: Albinism
I should add that your babies are adorable! Those wispy long eyelashes!
Thanks! @smushiFrom my research not everyone has red eyes it's just a stereotype. But I already load my daughter up with sunscreen and try to make her wear hats in the summer.
Surprise BFP! 06/08/15
Nadine GraceMarie 02/10/16
Diagnosed with placenta increta post delivery: emergency partial hysterectomy - cervix and ovaries still intact
Gestational surrogacy or adoption TBD
I actually recently got my windows tinted for my birthday because my kids are so sensitive to light in their eyes
anyway I hope everything works out for you and the time passes quickly until you get your answers!
Its not a big deal to our family, I mean things could be a lot worse. Just have to stay up on their sun protection and eye checkups. Right now Camdens eyes are healthy besides the nystagmus. Lily has an appt in September to see if she needs glasses( we're pretty sure she's farsided and want to get her eyes taken care for the start of preschool). The hardest part for me is educating the extended family on this....repeating myself constantly is draining.
Some of you may wonder the odds of two kids having albinism. Well apparently my husband and I are both carriers of the gene. So everytime I'm pregnant there's a 25%(1in4) chance our child will be albino. So I guess we're just extra lucky.