NOAH AOC

My 3-week-old daughter has just been diagnosed by a PO with some form of albinism. We have been referred to genetics for further testing to determine which type she may have. Caroline was born with very blonde, almost white hair, and fair skin. I am also fair skinned, blonde, and blue eyed along with a number of family members on both my husband's and my side of the family. Our older daughter is blonde and blue eyed also. So Caroline's hair color was not a big surprise to us. We did notice, however, that she was unwilling or unable to open her eyes especially in bright light. We only got quick glimpses of her eyes in the first couple weeks. Due to this our family doctor referred us to the PO where we got the initial diagnosis today. Needless to say we are shocked and have millions of questions but do not know where to begin. Do you have any suggestions of things that I can do with Caroline until we are connected with early intervention services?What questions should I ask her PO and pediatrician?

Could out 2 year old also have some form of albinism? She appears to have normal vision (names all colors, no noticeable light sensitivity, spots things across the room that I can't even pick out). She does have blonde hair (although it is darker) and blue-gray eyes. I am very vigilant about sunscreen due to my fairskin and history of sunburns. so she rarely goes out without sunscreen and/or a hat.

 Any advice or direction would be greatly appreciated!

 

Hi! Welcome to NOAH! My name is Kelsey--I'm a 15-year-old with albinism.

Since your new daughter has been diagnosed with albinism, it is possible for your older daughter to also have albinism,  but since your family tends to be fair, its harder to tell. you can always have her eyes checked to be sure. The doctor should be able to tell if she has any pigment in her eyes and tell you whether or not she has albinism.

I don't know much about early intervention...as far as I know (and I might not) I never got early intervention. Really just ask your PO whatever you think of to ask--haha, after I had an eye appt. a few months ago, that night I had thought of a lot of questions to ask him next time (6 wks. later) and of course I forgot all but a couple of them. So as soon as you think of something, write it down. If someone here suggests a questions you like, write it down with any others. And don't forget it at your next visit!!!!!!

 My suggestions are to make sure Caroline isn't in bright light, even indoors, without either a hat or sunglasses, or both if it looks like she needs it, and sunscreen (just as any kid should have.)

AANNDD lastly, just know that she will be fine. Albinism isn't some horrible disease. As Caroline grows up she'll learn to adapt without you or her even knowing it.

I'd love to answer any other questions you have. :)

Hello, welcome and congratulations on little Caroline! I would suggest keeping the blinds drawn and her out of direct light so she is able to open her eyes and look around. Some people with albinism are more photophobic then others so let Caroline be your guide on the lighting and what she is comfortable with. High contrasting colors, moms can wear bright red lipstick when talking to her, get her black, white, red, yellow toys. When she gets a little older you can get a black or yellow sheet or blanket and place her toys on there. In the car make sure the sunlight is not peaking through the sun shades, at that age the infant car seats usually have a hood on them. Your daughter should be seen more frequently by the PO the first year because all babies vision develops quite a bit over the first year and should be monitored. I would ask your doctor when they would suggest glasses. There are a few schools of thought on this but many believe getting glasses early will help their child get the most developmentally and visually they can is important. Other parents maybe able to provide more info. I would ask both the PO and pediatrician if they have any experience with albinism. So you will know what experience they have backing the info they are giving you. My son does not have a visual impairment but we knew he was quite photophobic. He was not diagnosed until his younger sister was. It is harder to tell with families that have similar coloring but it never hurts to check. It is wonderful you are already looking into early intervention. Everyone on this site is very helpful and supportive. So let us know if you have any other questions, we would love to help!! Roxanne

Thank you for your reply. I appreciate any advice or tips that you may have.

I, of course, thought of a million questions once we left the PO's office. I was too shocked to really think of the too many questions at the time. My biggest concerns is making sure that Caroline is able to do as much as she can and have as normal of a childhood as possible.

 Do you recommend any specific type of sunscreen or does one type work better than others? Infants under 6 months are not suppose to wear sunscreen but is that different for infants with albinism? I will most likely keep her out of the sun but should I also be using sunscreen.

If you were connected into early intervention services, how and when were you referred to them? Is this something done by the PO or regular pediatrician or something that I can do?

 Do you have any specific toys that you would recommend? Many of the toys I have from my older daughter are pastels, pinks, etc.

Again, thank you so much for any advice!

Congrats on your precious little girl!

I dont know much about the US EI programs, I'm in Canada. But as for sunscreen we were referred to a dermatoloigist for Bryn (OCA2). He said we would need a total block sunscreen and ones with the ingredient Mexoryl in it and a min SPF of 60. We use Ombrelle SPF 60. They also have the kids one.

We were also told that using sunscreen on infants under 6 months was not really recommanded...unless they required it. Obviously Albinism is a good reason to use sunscreen on infants but asking your doctor about it may be a good idea. Usually just keeping them out of the sun and covering them in light clothing works for trips from the car into a building and such.

We found that keeping Bryn out of the sun or completely covered in light clothes and hat and a light blanket worked well when she was a baby (we didnt know she had OCA2 then, she just screamed when we went outside).

Also, sunglasses. Using them indoors can help with the eye contact and the visual exploration.

Hi and Congrats on your lil girl!!!

For early intervention (EI) call either your local school district or your special services in your county. Call the Commission for the Blind for your state as well. Don't be upset by hearing those words, they can get you help. You have to get a note from the PO stating she has albinism. Does not matter which type. Once you have that diagnosis on paper you are entitled to EI. The EI is so the baby will not have delays. Our kids have some delays in the begining because they learn through other than seeing.

This is a wonderful yet trying time right now, You will cry  a lot and most likely do a lot of research. To be honest, I did not sleep for the most part from when Andy was about 2 months until he was 7 months. I was up all night looking albinism up on the internet, wondering if my son would drive, and other worries. Finally at 7 months, I figured out "who cares" I have no idea what technology will be out there when he is 17.

 Please ask as many questions as you can. We have alll been though what u r going through.

My son is almost 2 1/2 and is a very happy lil boy. Plays outside, has a big boy bed and is starting to potty train. He walked at 12 months, he did roll over and crawl late, but that is normal for these kids. Anyway, enjoy your baby, have your cries, but she will be ok, albinism "so far' has not been too bad for him. He has no idea he can't see to go, has no delays and is an awesome kid!!!

Oh oh, as for toys, anything that is red, yellow and black. Contrasting colors are good too. When my son was 3 months old he got a I think it is fisher price flashlight with different colors and a keys thing for him to chew. he loved it! At 4 months I was told to take him in a dark room and put the flash lite in the wall. Have him follow the light. That helps them learn how to follow and "track' objects. My mom made him with velvet a yellow fish on a black background. Contrast is very important for the 1st year. Depending on income and family size, she might be elig for SSI as well. Some states also have a special medicaid for children with vision problems

Sorry to go on.... Hope this helps

Hey there! Congrats on your new baby girl Caroline! My 8mo old was just diagnosed at 4months with OCA. I've learned a ton through this community. They're amazing!

My biggest tip would be the same as others. Get a good pair of sunglasses with a strap and some hats with sun protection(if possible).

We also bought some "Daylight" lights for inside of our home. It seems to be much more comfortable for Carrah. She has extreme photophobia.(Could not open her eyes at all in the sunlight when she was an infant) Hope this helps a little bit :)

Thank you so much! I have already learned a ton and it has been less than a week.

Caroline also seems to be very light sensitive. We keep our shades drawn and try to keep her in the dim of light as possible but she still has trouble opening her eyes. Some days she will be wide eyed, looking around for long periods of time and others we barely see her open her eyes. I haven't been able to figure out what is different on those days yet.  

I bought her a pair of sunglasses with a strap but they are too big right now. She is only 4 weeks old today. She screams whenever I put them on. I'm going to look today for another pair. Do you have any recommendations for a place to buy or order good ones?

What are "Daylight" lights? We are moving to a new house this weekend and it is very sunny (ironically one of the things we liked about the house. We would have lokoed at things different had we known when we bought the house). The lights sound interesting.

 Again thank you so much! I have a lot to learn but I feel like I'm heading in the right direction!

Hey there.

This is the light bulbs we have. GE Energy Smart 15 WATT(=60WATT) Daylight 6500K bulbs. I'm not sure why they are easier on her eyes, but they definitely do seem to be. It isn't as yellow and bright. It has more of a softer off white glow to it.

We buy our sunglasses at Coolibar and Baby Banz. Carrah didn't start wearing them until after her diagnosis at 4 months. I usually just kept a blanket over her head when she was an infant because I noticed she couldn't open her eyes in the sun.

 Svenn,

I was in the same boat as you 4 years ago.  It did take some time to get the diagnosis, paperwork and help.  I put together this free website, so check it out while you are waiting: http//:www.mothersplayground.com.  There are things you can do right now to make your baby's life easier.

We have all been there and I am sure I speak for many parents when I say this challenge is a blessing in disguise.

Tara

 

 

We use dimmers above the kitchen table and three way lights in the rooms to adjust the settings. I love my sunny house too but I layer the windows with sheers and blinds and curtains to filter the light. Big windows can be tinted. Thanks to some advice we found the tinting in the auto department at walmart and put it on our windows in the back of our van. The tinting that came with the car was not enough. Plus that static cling tint will work in the house. We use badgers sunscreen, it is all natural and my son skin is very sensitive. It is hard when they are babies and they are always looking up into the lights. White can be very reflective so if she is in white or has a white blanket or overcast days compared to sunny days. Just some ideas.