Community Discussion Forum Parent support Hi from Cornwall England Reply To: Hi from Cornwall England

Avatar of Sue

Hi Tracie thanks for accepting me, Ben is a classic pku and he’s on about 10 exchanges a day at the moment. He’s had a look at this website with me and has shown some interest in reading what people have to say.
I will speak to his dietician the next time we meet with her about Kuvan, I don’t know if the drug is available to pku’s in this country yet, I will let you know as soon as we find out.
I read a report online(NSPKU)UK website that said that Kuvan lowered phe levels in the blood but there was no evidence that it actually stopped the build-up in the brain. Is there any evidence to support this in the USA?
It’s 11pm now so I must log off and get to bed, I will check back tomorrow.
Bye for now

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