PKU.com Community Discussion Forum New to PKU.com Going back on the diet. Reply To: Going back on the diet.

#7990
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Tracie_PKU
Member

Hi Gokiburi, nWelcome!I too have pku.What type of pku do u have?
I am on a new pill called Kuvan.I only take 4 pills a day,which is a breeze from the 60 phenyl tabs i had to take. nWhat u need to do is get in contact with a PKU Doctor,and dietition.As for myself my Doctor lives in La Ca.,and i am in Asotin Wa. nA couple thousand miles away.We do all of my Phe testing via mail.My family prac. here in Lewsiton is very good. nThey (PKU DR.,and Family Prac.)
talk twice a month so they can keep the FP informed of my condition.
I understand on how u feel for the rarity of our disease.
I am the only person in Idaho,and Washington who has pku.So i tend to have to school the Drs. a bit more on my end.
You need to find a Dr. who is willing to communicate everything through mail or even e-mail.
Let me know if there is anything i can do 4 u.
I can get u all contact info on Kuvan if u choose to go that way.
Take care,and good luck.
Tracie-PKU

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