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Forum: June 2013 Playroom

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  • 1 Post By LifesGood

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  #1  
September 24th, 2012, 07:29 AM
LifesGood's Avatar Platinum Supermommy
Join Date: Mar 2008
Posts: 7,937
I know I already introduced myself once... But I hope that we will all be together for a long time so I wanted to tell you more about myself.

I have a genetic liver disorder called PKU. When your LOs are born there is a newborn blood screening test that is done on babies to check for diseases and disorders and PKU is one of them.

Anyway I have had this all my life. In short I cannot breakdown protein properly. I am only allowed to eat 6g of protein a day anymore than that and it is toxic to my body and brain. I have to take protein suppliments to make up for all the vitamins and minerals that my diet is missing and I have to eat special foods. I have never had meat, fish poultry. I am not supposed to have much pasta or grains, no bean lentils or soy and no dairy...

When people like me want to have a baby out diet gets even more restrictive. we do weekly blood work to monitor the amount of protein in my blood. Proper control is really important when growing a baby because high levels are toxic to the baby's development, can cause mc, low birth weight, small head size and mental issues. Its a lot to handle.

BUT I have done it twice and have 2 beautiful healthy kids. I wasnt supposed to get pregnant this soon though and I have been struggling to get my levels down. I should know by Wednesday or Thursday if my level is good. But I am super stressed in the mean time.

So There, thats me in a nutshell.
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  #2  
September 24th, 2012, 07:38 AM
Mega Super Mommy
Join Date: Oct 2011
Location: U.S.A.
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Oh wow. I can't imagine how hard that must be at times.

If you don't mind sharing, what DO you eat? So many food groups are knocked out, what are some typical meals for you?

And what are the chances that you pass that on to your kids?

Thanks so much for sharing a part of your life
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  #3  
September 24th, 2012, 07:46 AM
LifesGood's Avatar Platinum Supermommy
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Lots of fruits and veggies and there are companies that manufacture low protein foods such as pastas, breads and baking flour. There is fake cheese, mushroom burgers mixes for pancakes, muffins and such. There is a large variety of modified foods which is great but I sometimes have a hard time making separate meals for myself with 2 toddlers wanting me to share all the time.

I tend to do low protein pastas for dinner, for work I bring veggie soup and salad or pasta and veggies. I can have some sugary cereals, for breakfast but I tend to eat harsh brown patties a lot at work

It is genetic so there is a small chance but my husband would have to be a carrier of the same disorder as well. Which is rare (he has never been tested it costs like 10 grand). Both my DD and DS dont have it so fingers crossed.

Thankfully honestly as much of a pain as it is it is completely managable with no side effects as long as you are on diet and take your suppliments every day so it could be a lot worse.

Thanks for being interested Erica
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  #4  
September 24th, 2012, 07:57 AM
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You have a great attitude about it! Of course, sometimes when it's all we know... it's easier to cope. I assume it's something you've known about your whole life?

I'm glad your children don't have it, and hopefully the one in your belly won't
I do find it interesting!
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  #5  
September 24th, 2012, 08:12 AM
LifesGood's Avatar Platinum Supermommy
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yeah my parents found out at 14 days old after my newborn screen came back.

I will throw in a plug for new born screening here. People are given the option to opt out of doing it. DONT. I know its hard to see your baby get a needle and cry but it only hurts a little and it tests for a large number of issues. If I had PKU and didnt ge tthe test done I would have been mentally retarded before the age of 1.
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