My son has hyperphenylaninemia, he is now 28 years old.  He is no longer treated with phenylfree formula, as his doctors stated no treatment is necessary.  His eyelashes are starting to turn white. I was wondering if this has any correlation with the untreated pku.  His highest level was 22 when the first level was obtained after his first challenge.  His levels were between 3 to 6, with some as high as 12. Should he get a second opinion about treatment also?

Summarized question: Should I get a  second opinion for hyperphenylalaninemia treatment?