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

Viewing 5 posts - 1 through 5 (of 5 total)
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  • #7989
    Avatar of Glenn
    Gokiburi
    Member

    Hi, I’m 29, been off the diet since 12, and I feel everyday like I’m exhibiting more and more of the symptoms of untreated PKU. The problem is, in my country of residence (Japan) it is VERY rare, and there are very few clinics in the country and none even remotely close to me. So I want to take matters into my own hands. I want to use pills or capsules if possible. I still have nightmares about that godawful formula 20 years ago. How could I figure out how much I would need to take? Are there levels for body weight or anything like?

    #7990
    Avatar of Tracie
    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

    #7992
    Avatar of Glenn
    Gokiburi
    Member

    Thank you Tracie! I’m so happy to find a community like this

    #7997
    Avatar of Jennifer
    jenn_harney
    Member

    Hi Gokiburi! You should definitely try Kuvan since it could be so beneficial if you are a responder!! But your body also NEEDS its formula in order to be healthy!! Without formula, you’ll basically have a protein deficiency since you’re not getting all the amino acids you need. Formula also helps your body get rid of too much phe faster!! I take my formula in pill form cuz I hate that nasty-smelling liquid just as much as you!! :-) My pills are called “Phlexy-10 Tablets.” However, since they are pills I have to take 60 of them per day. It’s really not that bad though. I take 20 three times daily at morning, noon, and night. I can take 2 pills in my mouth at a time, so I consume 20 pills in only a minute or two. They are so convenient!! Hope this helps!!

    #8099
    Avatar of xronis
    rondom
    Member

    Hi Tracie-PKU.My name is Chronis and i live in Greece.I have a two month old son with PKU. I would be very gratefull if you could give me some advises about pku and how to treat the situation with a litlle boy.You see i am new in pku and it would be very helpfull for me to hear from someone ho is older from my son,what a pku patient can eat, and how you can control the situation and not to eat anything that is forbiden.If you have some informations please sent them to me ( if you want of course).I would be very gratefull to here from you.Thank you very much.

Viewing 5 posts - 1 through 5 (of 5 total)
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