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

#7448
Avatar of Jennifer
neurotic mom
Member

I had no idea that levels could be that high?!!!Really, they were 2700 and 750? nBelieve me, I know how frustrating the level fluctuation and not getting any concrete answers can be. I don’t have a classic pku baby, she’s hyperphe, but hopefully, having someone who has been through the incredibly troubling, upsetting, and aweful wait and see game may help. What are the doctors telling you? Does the fact that the baby was a premie and has a heart issue make a difference? Please let me know. I hope I could help in any way even if I have to ask my daughter’s nurses for you.

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