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Adults with late diagnosed PKU and severe challenging behaviour
  1. Francjan van Spronsen
  1. Dr Francjan van Spronsen, Beatrix Children's Hospital, University Medical Centre of Groningen, University of Groningen, PO Box 30.001, 9700 RB Groningen, The Netherlands; f.j.van.spronsen{at}

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Dietary treatment is tried in many late diagnosed phenylketonuria (PKU) patients. The reported effects vary widely, while the efforts for both patients and institutes are large.1 The double-blind, crossover study of Lee et al (see page 631) is the first to change experience into evidence-based medicine in late treated PKU patients with a a severe intellectual disabilty.1

In the UK, theoretically one would expect that there are some 2000 late treated PKU patients. However, only 133 were found in this study. Why? One of the reasons may …

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  • Competing interests: None.

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