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Posts by amyowltree

Thank you for the article. 
Do you have any experience in helping with nutrition for children with PKU?
Good job Momma.
Thank you Tracy!  The Babycenter one is helpful!  I will sign up and join in their conversations.  They even have a thread about identical twins with PKU! 
I would have concerns too if a neighbor kid, of any age, came over as often as this one, regardless of how they were acting.  You as of yet do not know his mother or grandparents and I think that is something that is very important when their child is spending so much time at your house.  Like a previous poster said, we are afraid to be direct, but it is truly needed more often in our daily lives.  I suggest that you talk with the child's family.  I would be concerned...
I originally posted this question in the nutrition and good eating forum but no one responded.  I would really like to connect with parents who have children with this metabolic disorder.    In layman's terms:  my identical twin toddlers have a genetic mutation that makes it so they can not process protein properly so they have to maintain a lifelong diet of restricted protein intake or they will suffer brain damage.   Anyone out there have to live this way?
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...
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.
I know this is an old thread, but I just "re-joined" the forums and this was the first that I read because the title called out to me.  I have 2mo twin girls and a 6yo and I have had the feelings of failure also.  I hate when they cry and I can't meet their needs right away.  They have this special nack for waking up at the same time and being HUNGRY!  I want to thank the Gryffinndork, Annette for the kind words that you posted, they made me feel better.  ThankfulMama, I...
Hi there all!   I just thought of trying to get on the forums here for a little help with my expanded family!  I just had twin girls, they are two months old now.  I also have a nearly 7yo daughter, who is a big help.  I have been breastfeeding my girls and lately I am concerned about having enough milk for them.  I don't get much time on the computer so if someone could point me in the direction of where to look for help in the forums or even on the internet for...
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