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

#7712
Avatar of Tracie
Tracie_PKU
Member

Hey Bre,
Its Tracie,and i did speak with Dr.Koch. nHe says i will take up to 5 pills a day ,and continue my formula.(hpoefully a different kind)It tastes not the best. nHe told me i would take 2 pills in AM and 3 pills in PM does that sound right to you? nJust curious!
I do see him 1 time a year,and do all my blood levels through the mail.
I’m actually waiting for my blood persription in mail then i go to the closest hospital they draw it and i send it to the lab airmail. nAt least i don’t pay for none of it. nChildrens in La Ca. PKU study takes care of all my medical bills till my insurance comes through on Dec.1st.
I don’t live in Ca.i am in washington,but seattle childrens does not support Kuvan. nSo Dr.Koch says it will be a waste of time trying to contact them. nWhich stinks.They are the closests to me and thats 7 hrs away for the clinic.(PKU)
Isn’t that wonderful. nAnyways take care,and talk to you soon.
Tracie-PKU

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