PKU.com Community Discussion Forum What’s the Phe? questions about Kuvan and self phe test Reply To: questions about Kuvan and self phe test

#8724
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BreaMarie91
Member

Sarah is right. Having classical PKU does not automatically mean your daughter will not respond to Kuvan. I have classical PKU, and Kuvan has worked for me. The only way you will know for sure if your daughter is a responder is to try Kuvan and see if it lowers her phe levels. However, I am not sure if Kuvan is available in Korea yet. You will need to speak to your daughters PKU doctor or dietitian about that.

As far as a home monitoring device it has not been used yet. Many people are able to do blood tests at home and send the blood test into the lab for testing. For this we use the filter lab slips that are used to test for PKU at birth and lancets. However, Biomarin is in the process of creating a home monitoring device. From what I understand this device is suppose to work with the same concept as a glucose meter used for diabetes. The only difference is that this device would test phe levels.

I hope this helps!

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