I spent the first decade of my life living in Europe, and was treated at clinics in France and England. From my experience, the PKU clinics in Europe are more strict about the diet and see it as something to follow for life. Similarly, Europe seems to have more accessibility to PKU foods and alternatives. I remember when we lived in France there was this specialty foods store in Paris that had a TON of PKU treats. I would always get my
Choquitos when we visited! :)
My mother's family is German, but my father is American. Around the time I was finishing elementary school, my family decided to move to the United States to be closer to my dad's side of the family. This meant that my PKU would now be treated by an American clinic.
I remember one of the early visits to the American clinic, my doctor at the time told me, point blank, that I could go completely off the diet. I was 11 at the time, and this was the greatest news anyone could have ever told me! I would finally be able to eat like all my friends! My parents, however, were not so pleased.
Since birth, all my doctors had told my parents that the low phe diet was for life. I remember my dad saying that he was upset that the doctor made the announcement with me in the room. Having heard this news from my doctor, who I considered the ultimate authority on my PKU, I thought I had an all clear to eat whatever i wanted.
This doctor retired not long after, and the new doctor I started to see was more in line with what we had been told as I was growing up. The old way of thinking for PKUers was that the diet was only important to follow as the brain was still forming, until about age 12 or so. But the more up to date research has shown that the diet should be followed for life.
I am curious to know if any American readers had a similar situation where they were told they could go off diet, and are you back on the diet now?
I'd also love to know why the old methods in the USA were so different than the rest of the world... Maybe a future blog post?
