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

#7405
Avatar of Breanna
BreaMarie91
Member

Marieke, nYour daughters tolerance doesn’t exactly determine if she will be a responder to Kuvan or not. Before I started Kuvan I was told that I wouldn’t respond because I have classical PKU. I tried it and went from 300 mg of phe to 1000, which is a very big difference! I also know of two people, one who had a very low tolerance (about 175 mg of phe I think) and another person who had hyperphe and was allowed something in the thousands. They both responded and Kuvan allowed them to handle much more phe.
In the future if Kuvan becomes available in the netherlands and it is something your daughter decides to take, then go for it wither or not your doctor thinks she’ll respond. Kuvan is for anybody with PKU wither they have classical PKU or hyperphe, your doctor can’t turn you down. If had listened to my doctor and not tried Kuvan because she thought I wouldn’t respond I wouldn’t have found out that I did respond. Since 30-50% of people who have tried Kuvan respond, you’ll never know until you try.
I’m also not too worried about side effects (I said not too worried, it does cross my mind) because after talking to my doctor for a very long time about Kuvan I found out that Kuvan has been used for about 10 years for other disorders and in Japan (I believe) it has been used for PKU, except it has been used under the name BH4. I have full confidence that if my doctor or dietitian had even the slightest notion that something wasn’t right they would pull me off of Kuvan before I could even say Hello. nLike I said, Kuvan’s a personal decision. If it’s something your daughter wants to try I hope it becomes available in the Netherlands soon! nBreanna

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