Anyone on here have children with PKU - Mothering Forums
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#1 of 4 Old 07-05-2013, 03:27 PM - Thread Starter
 
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I can't seem to find anyone that talks about having PKU.  I only find links to threads where people have talked about refusing the infant screening at birth. 

 

My identical twin girls, 14 months, have PKU and I am looking to connect with others that have children with PKU.


Amy, SAHM to 6yo Nadia and 2mo Darcy and Penelope

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#2 of 4 Old 07-07-2013, 07:52 AM
 
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I wonder if you posted this in "parenting" if you get a response??? You posted in 'nutrition and good eating"

http://www.mothering.com/community/f/35/parenting

Good luck and if you need help let me know!!

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#3 of 4 Old 07-08-2013, 08:17 PM - Thread Starter
 
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From the Mayo Clinic website:

PKU:

"Phenylketonuria (fen-ul-ke-toe-NU-re-uh) is a birth defect that causes an amino acid called phenylalanine to build up in your body. Phenylketonuria is caused by a mutation in a gene that helps create the enzyme needed to break down phenylalanine.

Amino acids are the building blocks for protein, but too much phenylalanine can cause a variety of health problems. People with phenylketonuria (PKU) — babies, children and adults — need to follow a diet that limits phenylalanine, which is found mostly in foods that contain protein.

 

Babies in the United States and many other countries are screened for phenylketonuria soon after birth. Although phenylketonuria is rare, recognizing phenylketonuria right away can help prevent serious health problems."

 

Thank you for suggesting that I post in the Parenting Forum, and I may re-post there, but this is actually the correct place to post, in my opinion. 

 

My girls are on a protein restricted diet and I am wanting to connect with other parents that have to deal with this diet lifestyle.


Amy, SAHM to 6yo Nadia and 2mo Darcy and Penelope

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#4 of 4 Old 07-08-2013, 09:57 PM
 
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Cool, I was just trying to get you to a wider audiencesmile.gif Good luck!!!

ETA: And I was not sure if you knew exactly where you postedsmile.gif. I saw that you are a new member and when I first started here I always posted in the wrong section *sigh*

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