Community Discussion Forum New to I've never even heard of PKU… Reply To: I've never even heard of PKU…

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My daughter is 10 months old and is also named Marley!  She also has CPKU.  Like you and  your wife, I was also terrified with the diagnosis of PKU.  I also breastfed my daughter for the first 6 months of life along with her Phenyl-Free.  I felt like I was almost poisoning her by breastfeeding her after getting the diagnosis, but the dietician assured me that it is absolutely necessary that she gets phe from some source and not to feel that way.  I can't remember exactly how many ounces of breastmilk she was allowed to have in the beginning but I know at one point I was breastfeeding her 4 times a day, thinking this can't be good but her level would be alright.  We have had to make many adjustments to her diet these past 10 months as her levels go up and down like a roller coaster depending on how fast she is growing, etc.  I hope that you and your wife are adjusting alright.  We are still in the easy phase of Marley's diet.  It is when she switches to regular table foods that I think it will become more difficult but we will adjust to that as well.  I always feel like there must be some effect the PKU is having on development but my Marley is developing right on schedule and your Marley will too!!  Good luck to you!

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