Community Discussion Forum Parent support Looking for information on mild PKU Reply To: Looking for information on mild PKU

Avatar of Nicole


I am so glad that information helped you!  I know it helped me relax…..I used to live in a constant state of fear that a 7 was going to damage his brain!!!  Our pediatrician did a HORRIBLE job of informing us that Ace had PKU (basically handed me a paper that said he was going to have seizures and be mentally retarded, told me to stop breastfeeding him and that we had to take him to the PKU clinic and left the room!).  It took me months to recover from that and to believe anything my clinic said about Ace living a healthy normal life.  Like you said its been quite a journey….but I am also at the point where I look at kids in wheelchairs or with autism and am thankful that Ace isn't in that situation.

I think the other thing to remember…..and I may be wrong about this….but I feel like he made not have a level of 10 all day long…..maybe it was just that high when you took his blood?  I am starting to relax about it all….but we are also starting solids and I feel my anxiety level starting to rise:)

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