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Babies: 9 - 12 Months
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Any other PKU mom's around here?

lovebug214lovebug214
in Babies: 9 - 12 Months

Hi,

I'm Darlene. My son Ethan was born with PKU -Phenylketonuria. We found out 5 days after he was born. He'll be 8 months on Tuesday and he is doing great. Just wanted to know if there where any moms out there dealing with the same thing.

Take Care!

Darlene

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Re: Any other PKU mom's around here?

  • cniscnis
    I don't have it nor my son but my SIL and her 2 sisters all have this.  If you have any questions I am sure her mom would answer them for you.
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  • lovebug214lovebug214

    Thank You for you're response!

    I don't really have questions. Just looking for someone to compare things with or talk to about recipes and such.

    I know there are a few websites for it, but I was just looking "outside of the box" so to speak.

    Again, thanks! It's alittle more "popular" than I ever imagined. We had never heard of it until we were told Ethan had it.

    Darlene

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  • cniscnis
    Your welcome!  I know that she is testing out a new type of pill for it right now.  She is praying they would just come out with a shot.  Right now since she wants to try to get pregnant she is taking 90 pills a day for it.  I have been trying to find her another pregnant PKU person to talk because it is so she would have someone else that new exactly what she is going through.
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  • lovebug214lovebug214
    You must be talking about Kuvan. Since Ethan has a mild case he may be eligible fot that when he is 4. But for now he gets a special medical formula from the state that helps him break down the proteins. 90 pills a day seems massive. My heart goes out to her. I do not have PKU though. My husband and I are unknowningly both carriers. Thats how Ethan got it. Best of luck to your SIL in her pregnancy quest.  
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  • R*LouR*Lou member
    Have you tried posting over on the Special Needs board?
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  • meganschneidermeganschneider member
    My son has classic pku, he is two. Please get in touch !
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