Community Discussion Forum Parent support kuvan trial for 2 year old??? Reply To: kuvan trial for 2 year old???

Avatar of carrie

 We were asked to start our 4 month old on it- we declined. I'd heard too many stories about how it worked for a while then seemed to decrease in effectiveness and i thought it best we get used to the diet b/c it would be harder to go back after being on a more liberal diet. I also had fears about how the funding might work long term. 

although now i wonder- is it time to raise the bar and start working on the other issues of pku- like improving executive .function? could kuvan help with that? i don't know- so many questions. 

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