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?
Hi, dear. I have gone through your question. I can understand your concern.  Furthermore, I think you need second opinion for your disease. Pku should not leave untreated.  At least it management should be done.  And if level is rising then you should take treatment accordingly. Hope I have answered your question, if you have doubt then I will be happy to answer. Thanks for using Chat Doctor. Wish you a very good health.