Community Discussion Forum Adults and PKU Pku moms Reply To: Pku moms

Avatar of Orla

Hi Kate,
I am really happy that you levels were so low but I think you must have a very mild form of PKU, I have never been off the diet and I am pretty good at keeping to it but my levels have gone as high as 1000 and over that was last year, this year thank God my levels are between 300 and 500 which Temple Street are very happy with.
I was up with them yesterday like you my husband and I are thinking of starting a family so I now have to get my bloods down between 150 and 250 and keep them at that level for three months. nThey have made a few changes to my diet I am now on 4 exchanges instead of 5 and I have to take an extra drink of Lowphlex in the day.
I have to start sending my bloods ever week and they will keep and eye on them for me and let me know if I have to make any more changes to my diet. nKeep in touch and let me know how you are getting on.

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