PKU.com Community Discussion Forum New to PKU.com Early Testing Reply To: Early Testing

#8939
Avatar of Tanya
jakesmom
Member

Thats the most frustrating part right now, our doctors don't have many answers. We are dealing with local doctors, who are doing what they are told to do from Sick Kids in Toronto. Hopefully come Monday we will have the chance to speak again to Toronto. So many questions arise between weekly check ins, and other than the internet, and the wonderful people on these forums, they cant get answered.

Doctor today said that maybe the urine test is still checking to establish if he has pku at all, however, I when they mentioned more tests getting done (this urine one) I recall asking if it was to still determine if he had the elevated levels, and she said no, he has them, we just need more answers. Looking back, I dont know if she meant, we know he has levels 317 so he has them…did she mean right now…or forever? Did she mean the test would let us know if he went to normal range, stayed the same or elevated.

I may be my own enemy, but I am doing whatever we can, to keep informed and up to date.

Thanks for your reply!

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