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Breastmilk may help my albino daughter

900 Views 11 Replies 10 Participants Last post by  tryingitnatural
Please you ladies that know so much about breastfeeding and nutrition help me!!!!!!!!!!!!!!!!!!! My daughter is albino (most albino people have blue eyes, you can see her pictures on our website )
As a result of her albinism she does not have enough pigment in her retna and is very very delayed visually and there is a good chance she will always be considered legally blind. I have read though that DHA and Lutien both help people increase and maintain their eye pigment. I need to know the best ways to get those nutrients to my daughter. She is 5 months old. I've read the higher my diet is in these nutrients the more of them will be passed onto through my breastmilk. I don't want to eat too much of something that will hurt her though either.

Right now I'm thinking that a good way to go would be to take bilberry with Lutein supplement everyday, a gelcap of codliver oil everyday, eat canned wild caught alaskan salmon 2-3 times a week, eat 2-3 eggs with extra DHA in them a week. Can anyone tell me if these are okay amounts or if it would be okay to take more of anything or something different to help my baby digest and get the most dha and lutein possible? I know that you have to be careful not to eat too much fish because of mercury- how much can I eat?

When will she be old enough to eat egg yolks or salmon?

If anyone knows ANYTHING about foods that help with eye development that I can eat or ones she can eat and when please please tell me, you can respond on here, pm me or, or contact me through our website. If I can do anything to keep my daughter from being permanently legally blind I want to do it!
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she is so cute!

I think everything you're doing sounds good. as far as the fish goes,

Egg is a potential allergen, however the yolks are less so than the whites. but it is pretty hard to separate the whites out *completely*, so I think the recommendation is to wait until 12 months. Fish, however, can be started at 10 months with the exception of shellfish (or high mercury fish, obviously). My sister and I grew up in an Italian family and loved anchovies from a very young age.

my dd is at risk for certain delays too, so on some level I understand what you are going through. all you can do is do your best and don't take the weight of the whole world on your shoulders- medical science is always coming up with new things to help and any child with as loving a mama as you are will thrive and be happy! vitamin c, e, zeaxanthin, selenium, and zinc are also good for eye health, btw.
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carrot juice!
I don't know much about this, so take this as a question to be researched...

If she's albino, then her genes aren't telling her eyes to make pigment, right? So optimal nutrition, providing her body with all of what it needs to make eye pigment, isn't going to help if her genes don't tell her body to use those nutrients to make eye pigment.

Is that right? I'm sorry to be a drag, I just want to understand the situation, and hope that you do, too.
bri276's advice sounds on target, as well as your ideas for taking the bilberry supplement. as for fish, i try to limit it to twice a week (i'm concerned about mercury too) but take a fish oil supplement daily. it's specifically for postpartum moms.

hth, and your little dd is an absolute cutie pie!
in reply to the question about her eyes not making pigment- they do make some, there are different types of albinism and my daughter has a type that is less severe (that's why her eyes are blue instead of pink). Its just that she has and makes way less than the average person.

I've read on a babyfood making site that you can boil the egg and then remove the white to help make sure you aren't feeding your child any egg white. Have any of you done this? Could the egg be softboiled or would it need to be throughally cooked?

Ladies THANK YOU THANK YOU THANK YOU for your responses. I'm finding the more I am learning about our daughters condition the more peace I am having about it. I am so thankful that we have a God whose strength is made perfect in our weakness and whose plans for our lives are not changed by any of our health problems!
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Your daughter is such a cutie! I LOVE the pix!!

Your dietary suggestions sound on track to me and I would say even eat more fish/take more fish oil. Wild caught Alaskan salmon is very low in contaminants. You can also take more fish oil than just 1 cap a day. Personally I'd rather take fish oil than cod liver oil just because I worry about the liver (it filters contamimants, that's its job). I take at least a gram of fish oil a day (I don't eat fish itself because I can't stand it).

You can also add in flax oil/ground flaxseed. I buy preground flaxseed that's been cold-ground and vacuum sealed and keep it in the freezer, and I eat 2 Tbsp a day on my oatmeal. The veggie forms of omega-3s dont' convert to DHA as efficiently but they do convert and it would be a healthy and varied way to get more DHA.

I know it's a little on the early side but personally I would talk to your ped about supplementing her directly with fish oil and/or flaxseed oil rather than just trusting that she'll get more through your milk. At 5 months, I don't think that supplementing with oils is going to throw her out of whack.

On the lutein front I would also focus on getting dietary sources through greens: and when your dd is old enough to start solids, work on getting those into her too. For example you can mince kale really finely and put it in soups, etc. or smoothies.
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cod liver oil is great and I think you should be taking more, but I'm not in a postion to say how much. I would email the weston a price foundation (google them) and ask since they are experts in cod liver oil.
Carrot juice. Raw and freshly extracted. If organic, it should be ok to start her on it, just diluted.
I wouldn't give her any solid foods until she's a bit older.
Egg whites have to wait to 12 months. And you do want to boil the yolk thoroughly, as it can have microbes living in it.
Kannon99's suggestion about the fresh raw carrot juice is good, as fresh raw foods have more nutritional value than cooked, but I would wait a bit to give her anything but mama milk, and just eat that stuff yourself to boost your nutrient loads in the milk.

You can buy fish oil caplets that come from lower-food chain fish, so they are much lower in environmental toxins that oil from salmon and tuna, higher-level fish which have concentrated more toxins. You can also buy oil caplets that come from algae, as this is where the fish are getting their omega-3's.
I don't have any advice on the medical aspect, but I just wanted to say she is GORGEOUS! What a cute baby!
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i am sorry no advice but I have to say you have a CUTE baby! And you are such a loving mother - ready you website almost made me cry
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