Community Discussion Forum That’s PKU life! Just need someone who can tell me a little more? Reply To: Just need someone who can tell me a little more?

Avatar of Becky

 Aww when I read this I was nearly crying…but I am pregnant and a complete hormonal, emotional wreck at the moment! lol!

It is really lovely that you care enough about your mum that you would come on here 2ask people if she is going to be ok and stuff!! 

I have PKU & if my lil 1 grows up 2 want to know about my PKU then I will be a very proud and touched mummy! lol!

Anyway helping you, as clenk already said, it is something that can be treated. As long as your Mum was treated when she was younger then she will be fine! He said to search a basic PKU website, I personally wouldn't advise it, because when I did it I was shocked and scared about what I read and I HAVE IT. I know all the symptoms and the diet and everything already and some of what I read just ALARMED me! When I searched it also said about if untreated the patient could be mentally retarded. I was really shocked to see that language like that is still being used today! 

I mean obviously you will want to know stuff and the internet is an amazing source of information. But could you not ask your mum if she has any information or leaflets you could read? I know when I was diagnosed (it may be a bit more recent than your mum but) my mum got all this information and she has a whole cupboard near enough with all that stuff in it! 

If not, could you not go to any PKU appointments with your mum?! Her dietician could probably help you to understand a bit more?! 

I really hope you get all the answers you want and if you want to message me at any time with any questions, please feel free!! x x

Quick Poll
Which of the following best describes you?
Parent/caregiver of an infant with PKU
Parent/caregiver of a child with PKU
Teenager with PKU
Adult with PKU
Grandparent of a child with PKU
Know someone with PKU
Healthcare professional