PKU.com Community Discussion Forum Parent support lots of questions Reply To: lots of questions

#5785
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formyson
Member

Heather,
Your question is a tough one to answer because no two hyperphe children are the same but with that said a hyperphe child will never need the extreme diet management that classic pku children need. My guess is the reason your child is not on a special formula now is because her levels are between 2-5. Do you remember what they told you the level was? When my son was born and first tested his level was a 2.7 Since then his levels have always been under 5 which is why he isn’t in need of special food. We test his blood once a month now. We still have to watch what he eats as his level will go above a 5 if he eats more than 30 grams of protein a day. But that allows him small amounts of meat and milk which is truly a blessing with this condition. You won’t really know your babies tolerance until time passes but if she is truly a hyperphe you will find it very manageable. I hope this helps. I promise you that as time passes it won’t weigh on your mind as it does now.

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