Community Discussion Forum Adults and PKU Maternal PKU Reply To: Maternal PKU


I am a 45 yr old woman late-diagnosed PKU. I have 4 children adversely affected by my PKU. They have multiple developmental disabilities, including mild-moderate-severe mental retardation. I was not diagnosed with PKU until I was 4 1/2 yrs old- at which time I was hospitalized in the Los Angeles Children’s Hospital in West Hollywood, California. I was put on the restrictive diet at that time. I was only on-diet for a year before they took me off again. They told my parents they didn’t understand why I was’nt severely mentally retarded, but they predicted I would be by grade-school. They advised my parents to have me “sterilized” and institutionalized. Fortunately for me, they didn’t take that advice. Well, that’s all for now.

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