Hi. I just found this website and really like it. My daughter has “atypical” PKU, also called hyperphe. I was wondering if there is anyone else with a young child (mine is two) with hyperphe to chat. I haven’t found much info on hyperphe and our geneticist & nutritionist are great but don’t seem at all concerned about our girl. We really don’t have to do any special foods, measurements or calculations, just formula and monthly blood tests. Our only guideline is under 10 grams protein per day, which has kept her levels well regulated since starting solid foods. She can eat regular pasta, bread, cheese, yogurt, milk etc. Write back if you or your child is hyperphe. Thanks!!
Hi, my 9 months daughter was diagnosed as hyperphe,too.We are leaving in Turkey. And our doctor’s target is to keep her level under 6 untill her 2nd birtday like any others. We are on a light diet. As she is only nine months, she can eat biscuits ( limited), vegetable soup (measured), yoghurt ( strictky measured), baby food and special formula. I couldn’t find any document about hyperphe just as like you. But our doctor is giving us hope by telling she will be only a standard vegeterian ( with no limits) which means she can eat regular bread and etc. and may be dairy products. It is very good to meet another mother with the same situation.
I just wanted to say, I’m glad to see your all finding others to talk to and help you! I don’t have hyperphe but me and one of my sisters have Classical PKU. So basically our diet is just stricter then your childrens will be (ie, we aren’t allow meat, diary, very little grain ect). Things will be fine, just keep your child away from what they’re not suppose to eat and do what your doctor suggests. Good luck with your new little ones! nBreanna