Community Discussion Forum Parent support My advice for parents of newly diagnosed pku kiddos

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    Avatar of carrie

     Today my youngest and only pku child turned 2 years old. I wish that you could meet her- she is a remarkably charming little girl- she likes to dance and sing and talks up a storm. She plays with her sisters and she thinks she is a big girl. Today on her birthday i spent a lot of time crying. When she was diagnosed i felt the walls coming in. i didn't know how i could possibly manage. I insisted on nursing as much as I could- and had a great team that supported it. I researched for months trying to find out as much as I could. I studied her numbers and re-measured everything as I was paranoid i would make a mistake. i prayed and I wished. I wished she would grow up-i wished she would grow up so i could see what pku would do to her. I wished and wished and wished. And today- I wish I would have cherished every single day. I wish I wouldn't have felt the need to study and obsess. My baby is fine. Her numbers were often alright and when they were not we worked with the dietician to get them back in range. We went through illnesses (including a really bad bout with chicken pox) and growth spurts and I spent so much of the time stressed. Looking back I wish I wouldn't have stressed like I did. It was ok. 

    Avatar of Sheila

     My granddaughter is a week old and she's been diagnosed with pku.  They're doing more tests and they've sent off a dna test as well.  Her numbers are from 200 to 325.  They have not put the nursing mother on any special diet or my granddaughter.  I'm worried.  I'm confused by what the numbers mean?  Where is the number supposed to be?  

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