We havent been offered a trial as of yet,as our dietian/doctors have decided that until funding is in place, they didnt want to tease him with it. (Increase levels of tolerance)
Jake has been labelled Mild PKU (From the previous Hyperphe).
As parents, we decided that we would simply work on and maintain healthy eating choices for Jake, despite the additional work. Placing the foundation for a healthy life if Kuvan never becomes available.
Jake had a BH4 test when he was about 6 months old, and they were trying to establish why his levels were behaving in the odd pattern they were. As a result, they are confident he will respond well to the drug.
Jakes development appears to be on track for most two year olds. I felt his speech was delayed…however, since hisbirthday, that has skyrocketted. He is in the 75 percential for growth/size and has been on that curve all his life. (With the exception of course of being 2lbs at birth, arriving 3 months early).
A couple reasons we decided as we did 1) why introduce new foods, we may later have to take away 2) I feel he needs to be able to communicate side effects before introducing it.
I think its a great option for those who respond. And I can completely state with confidence, we will re-look at it in the future. I think when he is older and harder for his diet to be achieved, we will need additional help..and Kuvan may be the answer!
Hope this helps I dont think there is a wrong answer. You will know best what will work for you, your family and your child