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

#9740
Avatar of victoria
addamd
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I prefer to stay away from any new drug (kuvan is pretty new for PKU < than 10 years) for a person who is in brain development like 2 years old baby if they have another option like diet and is able to control the levels in normal range with it. I do not discard the future use of Kuvan for my son, when he get older and more difficult to stay in diet control (will be soon after school age). He will be 2 years old next month and ALWAYS kept his levels in excelllet range and his growth chart shows curve over 90 percentile in weight and lenght. His milestones are achive before his older brother (no PKU) and I know that your guys are thinking I'm so lucky and it is true, I'm, but the use of Kuvan it is very personal issue and justread about it as much as you can, made lot of questions to doctors and keep in mind that it is a clinical trial at this time.

 

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