PKU.com Community Discussion Forum New to PKU.com Niece was just diagnosed at 4 days old Reply To: Niece was just diagnosed at 4 days old

#6636
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destiny
Member

hey, she’l be fine, and i think its a good idea going on to sites like this to get advice. am no expert in pku, but so far my 4 yrold is healthy, so i must be doing something right. u have to be hard sometimes, no matter how bad u wnt to gv the child something they cant have, dont do it. most of the time, ill write down what he has in the day, so i dnt forget so i dont worry. it is worrying when they get ill, they dnt like to eat, thisl make them weak obviously. when my sons ill il try fill his exchanges up with hiugher amounts of protein in them, like yogurts n chocolate. my sons blood levels havnt yet been so high. but once when he was in hospital, he was put on steroids which made them high. he was hyper, dark around the eyes and just naughty. it depends how high the bloods get and for how long theyr high for that decides the effect on the child. at the moment though , my boys levels are abit low, and im worryd because theyv always been fine. its horrible waitng for the results of the bloods to come back sometimes. they shud make a blood sample kit, like diabetics have, so u can get a result there and then. good luck. just follow the diet and everytin will be fine xxx

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