PKU.com Community Discussion Forum Parent support Anyone know about Kuvan? Reply To: Anyone know about Kuvan?

#7256
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cjqa2007
Member

Just updating you on what is going on with Kuvan here. My son has been on it almost a month now. We haven’t noticed any side effects and he hasn’t complained of any either. His phe levels are dropping. 2 weeks ago they were at 1.1 and then this last week it dropped to .7 Now we are adding some more phe to see how much more he is going to be able to take. Its kind of exciting seeing how well it will work etc.

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