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  • #7866
    Avatar of ashley

    my sister in-law had her lil girl taken away from her cause she couldnt keep her phe levels down.. i was just wondering what everyone thought about that cause i dont know much about PKU so i dont really know how important phe levels are but anyways childs services took her and she never got her back and they even let another family adopted her so no one in the family ever gets to see her

    Avatar of Breanna

    I am sorry this happened to your family. Phe levels are pretty important when it comes to the PKU diet. When phe levels are high (especially in younger children) it can effect brain development. Some issues that can occur because of high phe levels include: lack of concentration and energy, poor balance, irritability, mood swings, skin problems such as eczema, behavior issues, and stunted growth. If infants do not follow the diet they can experience seizures and possible mental retardation.
    The diet is needed in order to prevent these problems in those who have PKU. I hope this helps!

    Avatar of Tracie

    Hi Ailwalker, nMay i ask what mom may have struggled with in order to keep the levels down?
    Did the baby see the PKU Dr. regularly? nThe reason i ask is there is alot of programs for children with PKU taht are free to the family,and child.
    CCS,GHPP are just 2 that i can think of off hand. nMy heart breaks for mom,and i know it takes alot of involvement with Drs.,Therapyist etc. nTo maintain a healthy level.

    Avatar of rebecca

    What does CCS and GHPP stand for? nAlso, I know Childrens Support Division wouldn’t take a child away just for high levels. There must have been more to it than that… It is very important to keep levels down. However, if the doc had seen a series of high levels they normally try to help “mom” get them down by lowering phe intake. I have been the mom who didn’t want to take on the responsibility, but God gives us all obstacles to make us stronger! People usually take it too seriously or not serious enough. I know it can be tough taking care of a child with PKU, but what child isn’t hard to take care of. Maybe you could do some research and learn more about the disorder and prove that you are capable of caring for the child. Support Division does supervised visitation. Check with them.

    Avatar of r

    I’m very sorry to hear that. Phe levels are VERY important in PKU. If your levels aren’t low you can become mentally retarded if your brain is still developing. When you are older, it just makes your brain work slower and you can’t learn or interact so quickly. It’s hard to keep the Phe level low for some people because the food isn’t always the best but it’s important.
    All I can say is Thank Goodness for Kuvan. It’s a new medication I’m on and it allows me to eat whatever I want and my levels are always 2-3. It’s amazing.

Viewing 5 posts - 1 through 5 (of 5 total)
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