PKU.com Community Discussion Forum Parent support Low Levels in CPKU Preemies HELP PLEASE Reply To: Low Levels in CPKU Preemies HELP PLEASE

#7478
Avatar of Monika
monika26
Member

yes we have been adding only about 25mg of phe for awhile and his levels always stayed at .2 thats why they decided to add so much more at one time becuase we wanted to see what would happen and it did go up..so basically his level has been really low at 250mg a day so we tried 350 and it went up to 11 then when we tried to get it back down we were at 250 again and his level was a 9 then we brought it down to 230 and his level was 0.2 again..so now we are working are way up again. We are at 250 again and im going to get his blood drawn today and we shall see what the results will bring..It is all really strange..Oh and we live in New Berlin. so you are not that far away..im glad to meet you

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