I am a new mom of a wonderful 3 week old little boy. I found out when he was five days old that he had PKU. Prior to the conversation with the genetic specialist, I did not have any knowledge of what this was. I was completely devastated when I found out the news, due to the fact that I was unsure of what it was, and because the doctor explained it by saying it causes mental retardation. I am struggling with truly believing that my child will be ok as long as he follows the diet. I joined this site so that I could speak with other parents with children who have PKU, and how they feel about it becoming a part of their lives. If anyone has any advice or comments that they would like to share with me about their experience please share!
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
My son, Denver, was born August 28,2007, and I am in the same boat. I worry about making a mistake and not catching it. If I have questions I just call the dietician right away so that I don’t worry so much about it.
As for the future, I don’t think much is going to ease my mind until it is here. We live in a small town and kids can be so mean.
My son is now five years old, I had and still have the same worries as you do. Denver will be okay as long as he is on diet. As he gets older it will be easier for you. Just remember that his levels have to be elevated for a long period of time before it does any damage to him. If you take weekly test than you will know. Also something I have noticed with my son his moods change if his levels are higher. When he was born he was very cranky baby and then after his levels came down he was fine. It will be easier as he gets older. He will be fine.
It’s true that kids can be mean but I really think “special” needs are becoming more common. Many people have food allergies these days. There is a little boy I know and he a juvenile diabetes. I work as a waitress I meet many people who have restricted diets. nMy son is now two and has had no development problems . He’s always loved his Gerber foods and the containers always made it easy to track the amount of Phe’s he had eaten. I used to write on the plastic containers the amount of Phe in each one. This made planning his menu a snap when he was a baby. Hope this is helpful for the mom’s with little ones.
I agree with Sarah about so many people being on restricted diets or needing accomidations today.
I actually have a friend at school who is a year younger then me. I found out she has a gluten allergy and she found out about my PKU because one day we both pulled out Ener-G Tapioca bread! Lol, the first thought that came to my mind was ‘why is she eating PKU bread?’ She was the first person I met who didn’t think my bread was weird and vis versa.
Anyway, I just wanted to share that with you! Just goes to show you even if somebody doesn’t have PKU doesn’t mean they’ll never relate to how our lives are different. nBre
I have a 5 year old and he does so wondeful with his diet he knows what he can and cant have.I felt like that also and I was in shock but it gets easier with time I think.
My name is Jonathan and i’m looking for people wanting to join an interactive club called GOT PKU? CLUB
educating the public
improving the food selections
and much more
If interested please contact me via e-mail.
hi i know how u feel my eldest is 12 and he knows what he can and cant have,but when he is out with his friends you cant help but think maybe he will try somthing he’s not ment to.