Community Discussion Forum Parent support I’m new to all of this. Reply To: I’m new to all of this.

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HI! I am new to this site, but saw your posting and had to respond. My daughter who is now 2 years old, is hyper-phe. The difference is classic PKU babies are missing the enzyme to metabolize phe, where as hyper-phe babies have an enzyme that is deficient. Not working to the percent it should be. My daughter’s numbers have fluctuated somewhat within her 2 years, especially when she’s sick. She is on a low protein diet, but not extreme. She eats 2 pieces of cheese a day, 1 yogurt. Eats lots of fruit and carbs(cereals with rice milk) Can’t have milk, eggs, meat, chicken. She’s 2, but still drinking baby formula mixed with rice milk. She can tolerate it and she needs to get a certain amount of protein, but not too much. It’s a balancing act. We are trying to transition her to drinking the special formula. I hope your working with a nutritionist. I see mine everytime my daughter gets her blood taken (about once a month) Be an advocate for your daughter, ask all the questions you want, clarify your confusion. It is very scary, but take it one day at a time. You do get used to it and you learn more as time goes on. Let me know if you have any other questions, would love to help is I can.

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