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


Ok, so, we tried the Kuvan and it worked. Hailey is really responding well to it and has been on it for three months now! Her phe numbers are nice and level and she is thriving! Of course now we are dealing with adding in babyfood and rice cereal but even that seems to be working out alright so far. The specialist, dietician, myself and my husband are extremely pleased with Hailey's progress and her response to the Kuvan. I was nervous and I read everything I could get my hands on and tried to talk to anyone that knew anything about it–including the poor Biomarin guy…I had so many questions and doubts but this is really helping her and I am so glad we decided to go this route. It is so worth it!

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