PKU.com Community Discussion Forum New to PKU.com Anybody home? Reply To: Anybody home?

#4419
Avatar of Rebecca
splshglitter
Member

hey kami’s mom,
it will not give her permanent brain damage unless her levels are high for a long period of time ,like 2-3 months or so… at least that is what i was told. i hope i am not wrong. but it is important when they are that young to do blood testing every week or two, because you want to keep their levels between 2 and 6. that way if they are high, you can immediatley get them down and will not harm her brain. my daughters levels have been high a few times like between 10 and 11. she is three now.
and remember if they have any fever, teething, or virus.. their levels will go up. they are not always going to be perfect so don’t beat yourself up over it as she is growing.
it can be very challenging sometimes to keep there levels accurate all the time. for me any ways. for others, it might not be hard. my daughter is a very finiky eater and that is why it is sometimes a challenge for us.
write if you need anything.
blessings!

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