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

#7715
Avatar of Sue
suepkutalks
Member

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

Quick Poll
Which of the following best describes you?
Parent/caregiver of an infant with PKU
Parent/caregiver of a child with PKU
Teenager with PKU
Adult with PKU
Grandparent of a child with PKU
Know someone with PKU
Healthcare professional