PKU.com Community Discussion Forum Parent support My son has PKU, how do I deal with this? Reply To: My son has PKU, how do I deal with this?

#8916
Avatar of Erika
ashlee128
Member

Hello Kayleigh

I have a son, Trevor  who is 8 years old now and he is fine as finecan be.  I know it's a lot to take in now, as everything is easier said then done. We chose immediately not to have any more children.  We took care that situation. We thought the same way you did. Really because of guilt, because we did not knowhow it was going to affect his life and our life. You  have 25% chance your baby will have PKU, 50%  they're a carrier and 25% normal. We wish we did not get ahead of ourselves. We would have liked to have another baby.  I think it was so much to take in and they really scare you. Your going to be amazed just how fineRiley will turn out.  I promise. 

The food is getting so much better, I did not like the low phe food either.  We just fed him lots of fruits and vegtables. His favorite food is french fries.  Once it  sinks in, and you get a handle of things you will be fine too.

As far as the hubby, I was there too.  He will come around, but right now you have to take charge.  Riley needs you. Don't dwell, or get stuck with what if questions in your mind. Educate yourself on PKU.  God does not give  you more than you can handle.

Take Care and God Bless You, your husband

and Riley.

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