Community Discussion Forum Parent support Don’t know where to put this… Reply To: Don’t know where to put this…

Avatar of Breanna

I would highly suggest taking your son to your family doctor and requesting some tests done. The test that you would most likely need done is the newborn screening which your son would have gotten when he was a baby. It’s just a simple prick of the heel (in his case since he’s older it will most likely be the finger) and a few drops of blood.
If there is any number, address, email address etc on the letter you recieved then maybe you should contact them to see what the letter is all about. If your son did have PKU then I would think that you would have noticed some issues earlier like poor concentration, lack of energy, headaches, but most importantly most likely if he had PKU and was untreated he would probably have learning problems or be developmentally slow.
If he does have PKU maybe he has a very very mild case of what is called hyperphe…I guess that is possible. But most likely if he did have PKU he would need to be put on a special low protein diet (meaning no meat, dairy, very little grain, no beans, nuts etc), he’d have to drink a special metabolic formula to get nutrients and he would have to take regular blood tests to check how much Phenylalanine is in his blood. But please, I would suggest contacting your family doctor and talking to them about this because if he does have PKU and is five this would be something you would need to look into right away.
I hope this helped alittle bit. nBreanna n16 with Classical PKU

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