Community Discussion Forum Generation PKU Diet Reply To: Diet

Avatar of debbie

The medical professionals did think that it was ok to take us off the PKU diet about thirty or more years ago as they thought that the brain was develop it should be ok to discontinue the diet which has caused a lot of problems and grief to us who were affected at that time. I was one of them as I was off diet for 15 years or more and steadily and gradually went down hill, not wanting to socialize, agrophobia, etc but also the physical symptoms of being dizzy, feeling sick, tremors, a lot of weight gain which lead to other medical problems. Actually one of the PKU people I knew still remain on diet but because he was in his teens and growing really fast the formula which didn’t have the extra vitamins in it and the fact that his diet was the same as when he was under 10 his muscle started to break down and he found himself in a wheelchair and now with intense therapy he is on crutchers. This person is now in his thirties so people were so affected by the medical professionals rash actions at that time by parents and the medical team. Hopefully now everybody has learn’t that theories have to be tested and proven before acting on the information no matter how great it is. nJust to add one thing that I have a lot of good friends that are medical professionals we certainly need their friendship and support always.

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