PKU.com Community Discussion Forum New to PKU.com Please help me Reply To: Please help me

#7185
Avatar of Breanna
BreaMarie91
Member

For starters, I would highly suggest you hunt down a metabolic specialist/medical geneticist. Not to be rude, but most peditricians/family doctors have little to no knowledge of how to handle PKU. The doctor who told you that your sons levels were within normal range was clearly very wrong. At the time was your son on the metabolic PKU formula? If he was that would explain why his levels were normal, but without that formula and a special low protein diet his levels will be severely high like they are now.
That being said, 31 is extremely high. People with PKU are suppose to keep their phenylalanine levels between 2-6mg/dl. PKU isn’t something that you can get and it will go away, if your born with it then it’s there for life. Until you meet with a specialist I would suggest avoiding feeding your son high protein foods (meat, dairy, most grains, beans, nuts etc). Try to feed him things like fruits, veggies, fruit snacks, hunts lemon pudding and other things that say 0g of protein. All of these have some phenylalanine, but it’s better then feeding him something like meat.
I hope this helps! And I would definitely say get your son to a specialist as soon as possible so that you can lower his levels. nBreanna 16 CPKU

Quick Poll
Which of the following best describes you?
Parent/caregiver of an infant with PKU
Parent/caregiver of a child with PKU
Teenager with PKU
Adult with PKU
Grandparent of a child with PKU
Know someone with PKU
Healthcare professional