PKU - Anyone else with a PKU Baby

[Davies1]

Hi, my baby was born in July and has been diagnosed with PKU. I was just wondering if there were any other parents out there and how they were getting on with managing the diet.

A little bump for you.

My friend at schools half sisters both had PKU, and when I last saw them they were very bright and bubbly teenagers. My mum taught them both as infants, and by the time they were 5 they understood their diet.

Hi, sorry to hear that your baby has got PKU, my children dont have it.

But in a book called How to raise your children inspite of you doctor by Robert S mendelshon, he says that the test for PKU is sometimes false and that you should always insist on futher testing to establish what form of PKU it is. He is also adamant that you should be able to breastfeed the baby aswell. He says if you got a positive then at least at a year old you should get a retest done. His reasons are to deny the breast and be put on the restricted diet and then find out the result is a false positive can rob the child of alot of nurtients and benifits.

I hope I have not upset you, I know someone with a PKU child and his is about 5 and is doing ok, there is also a website for it if you google it.

Just make sure it definalty is positive.