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?

Avatar of Janice

Congradulations on your wonderful baby boy!!!

Well I dont have the time to read all the replies you got but I am sure they are all encouraging since that is the type of people on here.  I just wanted to say we have 3 children when our 1st  was born we didnt know about PKU she is now an amazing 7 year old thriving in school and can give you an ear full about PKU!   She actually asked us the night befoe her 7th birthday if she would still have PKU after she turned 7.  We held our breaths and answered her yes you will have it for your whole life.  and I was completelly shocked at her reply she said GOOD I would be sad if I wasnt PKU anymore!!   But back when she was diagnosed we where also completly in shock and overwhelmed.  It does get easier!!  Our middle child does not have PKU, but our 3rd and youngest does …he is three and I believe his hobby is sneaking foods he should not have!!  and he is still doing well even with his little Hobby   I did worry about what he would think about us having him when we knew he would have it.  But as for now I think that is nothing to worry about we have to deal with his big brother feeling like he is the different one instead!!  HaHa For a long time we actually did bloodwork on all 3 kids because the middle child felt left out!! 
Anyway thing will get better!  I promise.  I highly suggest finding a PKU event and attending it will do words for you.  I didnt notice where you are located but we are in wisconsin and there is a great group here plus we know I know contacts in Michigan, Texas, Illinois and Indiana if that helps at all.

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