Community Discussion Forum Parent support New Mom Who needs a little help Reply To: New Mom Who needs a little help

Avatar of Breanna

Hi, first of all I just want to say that your little boy will defintally be perfectly fine if he follows his diet. My name is Breanna and I’m 16, both me and my 8-year-old sister have Classical PKU (we also have 5 siblings without PKU). I grew up basically the same as any other kid my age, the only difference was that I had to be alittle more careful about what I ate.
The best you can do for your son is try your hardest. Eventually down the road you might make a tiny mistake when calculating his phe intake for the day, or maybe he’ll get a cold and his level will go up a bit. When this happens I think the best thing to do is not to dwell on the problem and to just jump forwards and remember tomorrow is another day. High phe levels only become a problem when they occur over a long period of time. Once in awhile a higher blood level then you want will probably show up and there isn’t much you can do. Just know beat yourself up about it and remember it’s not your fault and getting mad at yourself for it won’t fix it.
Your son WILL grow up to be perfectly fine if he follows the diet. I have and now I’m a junior in highschool, dancing almost 4 nights a week and planning on going to college to become a medical geneticist so I can someday work with PKU patients like myself. You sound like a wonderful person and I think your son is in great hands and you will do perfectly fine. Just keep your chin up and remember to think positive. There are so many things that myself, my sister, your son and all the other Phenylketonurics out there could be born with that could prevent them from living normal lives. Atleast PKU is something that can be control and still allows us to go to school and become what we want to be. nTake care! nBreanna

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