Community Discussion Forum New to PKU cure? Reply To: PKU cure?


My 3 month old is getting ready to start a week long trial of Kuvan and I am a little nervous about it. I came on here looking for some advice about side effects to look for, any dangers I need to watch for, etc. Her phe levels have been between 1.2 and 2.8 for a few weeks now and that is with her on phenex. Her specialist and the pediatrician both feel good about this trial…I'm not sure how I feel. Is it normal for a parent to be this apprehensive??

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