PKU.com Community Discussion Forum New to PKU.com Another newbie here Reply To: Another newbie here

#9695
Avatar of stacey
dracc02
Member

hi congrats on the baby boy . well I have pku and was born with it . I try and keep my levels around 5 but lower then 6 or seven is way better. some signs of high phe I found with my self is my mood changes I get irraitable and I also get ezema on my skin when my levels are high . its hard to tell with a baby though but if he gets cranky alot or a rash might be a sign another good sign is the pee if it has a musty smell that is a sign too . also if my blood is too high I get tired all the time so if hes sleeping alot that might be a sign to check his blood . but overall its a disorder that gets easy with time . Ive had three healthy children with having the disorder and the things they can do now a day compared to when I was born in 79 is amazing . wish u the best any other questions feel free to email  me anytime stacey   dracco_02@hotmail.com

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