Community Discussion Forum Parent support lots of questions Reply To: lots of questions

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Hi my name is heather i just found out that my 2 week daughter has the pku disease but she only has a minor case of it I believe it is called low hypa something sorry im new at this but i am totally freaking out because i dont know weather or not it is going to get worse and if it does what am i suppose to do. As of right now the doctors are telling me she dont have to be on any special diet because are phe levels are low does any one know if that is right or do u think she should be on a special diet. I know it probably sounds crazy not listening to the doctors but its hard to really listen to anybody right now im really scared of what is going to happen so i think maybe i could understand a little better if i talk to someone living with pku. So if any one can help please let me know. Thank you

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