Community Discussion Forum New to MIld Hyperphe Reply To: MIld Hyperphe

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When our third daughter was born and diagnosed with hyperphe, we were crushed as our other 2 daughters were not and had no knowledge of what PKU was. Being active duty military and sometimes having little access to specialists, we were never told about the “formula” until she was 1 year old. I had breastfed her the entire year, and then once introduced, she would not drink it no matter how we disguised it. Since then, we have monitored her diet completely excluding meat, dairy, beans, nuts, and breads to name the short list. She is a vegetarian and has never known anything else. We keep her levels at 6 or below, and she is a happy, healthy, intelligent kindergartener. We order many food products from Cambrooke Foods and PKUPerspectives. When her sisters eat waffles, we make special ones just for her. When her sisters eat BLT sandwiches, she gets hers on bread we bake for her and without the bacon and with avocado instead. Don’t worry, once you get a routine, feeding your child will be second nature.

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