Community Discussion Forum Parent support Low Levels in CPKU Preemies HELP PLEASE Reply To: Low Levels in CPKU Preemies HELP PLEASE

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I’m not sure whether his heart condition affects his PKU, we just found that because he was admitted for not eating and having a uti and upper resp. infection. When they did the chest x-ray they found it. It is all very troubling and frustrating, at least I know I’m not alone because that is how it feels with PKU- not too many people can understand. Thank you for responding, I am kind of desperate for some answers right now, and although his docs are great, I haven’t gotten them all and any parent knows that not having answers is devastating. Sorry for the negativity, just feel very alone with PKU…

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