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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Well, that is good and bad to hear. That’s awesome that you have such a great dream/plans. Youse seem like you will be a freat doctor/geneticist. You will be able to relate to people and that makes someone suffering from a disease feel a sense of comfort and trust in their care. I hope that you fulfill that dream and from what I’ve seen from you just on here I’m sure you will, and you are a very good big sister too!!
I spoke with his metabolic doc and dietician this afternoon and they said that because he is growing so fast he is using all of the phe that he gets, but you are exactly right – he might end up having mild PKU or atypical PKU. We won’t know for a while but I am definately praying for that, but most likely it is just because he is still preemie. Unfortunately the low levels negatively affect his tetrabiopterin deficiency and I don’t know ANYTHING about that condition or what it does, I just know that it can be bad.
You are very smart and you know a lot about PKU! Your mother must be very proud!
Thank you again!!

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