“The doctors realised that my diet had caused damage to the learning part of my brain and that my parents should consider putting me into an institution because they felt that I would never be able to walk or talk ot be able to live a normal life”
When I was 10 ½ months old I started to have convulsions, so my mother took me to a naturopath who told her that he didn’t know what was wrong but was sure it was connected with my food. He made arrangements for me to see a paediatrician. After many tests it was discovered that I had phenylketonuria. The doctors realised that my diet had caused damage to the learning part of my brain and that my parents should consider putting me into an institution because they felt that I would never be able to walk or talk or be able to live a normal life. I went off the diet by the age of 12, as, at that time it was believed you didn’t need the special diet anymore. I attended special school until I was 16, then worked in sheltered employment for some years.
As I was getting older, I used to find I would quite often run out of energy especially during the afternoon. Around this time, we heard about a young woman who had PKU and was still on the special diet. It was recommended that I resume the PKU diet and formula. After a while I began to feel as if I had more energy and things became a little easier for me. It was recommended that I have yearly visits to the hospital, which meant a four hour drive each way, and to continue with monthly finger prick blood tests to monitor my levels. Since that time with strict attention to my diet my levels are generally pretty good. Find my levels of concentration can go astray sometimes but on the whole I am able to manage with the help of family, especially my mum.
– Shared by Trudy’s Mum