Viewing 8 posts - 1 through 8 (of 8 total)
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  • #7614
    Avatar of Amanda
    Amanda86
    Member

    hey everyone . Its me Amanda Cosburn. I got a new computer for my birthday in June so I lost all my old user names and passwords so I couldn’t get back on here. And I just didn’t have the time to start a new profile. But I finally got around to it. check out my profile and website for new updates on me. Also anyone feel free to add me as a friend![/COLOR]

    #7615
    Avatar of Tracie
    Tracie_PKU
    Member

    Hi Amanda-Christine, nMy name is Tracie of course with PKU.LOL
    I just wanted to say Hi.
    I am new to the site,but i am on all the time for moral support.
    I have just started back on diet about 1 month ago.
    I look forward to talking with you. nWhat type of PKU do you have? nMe i am Borderline PKU,and i do struggle with nRecovering Anorexia,but have never relapsed.
    I will add you to my friend req.K?
    Take care, nTalk to you soon, nTracie-PKU

    #7617
    Avatar of Amanda
    Amanda86
    Member

    Hello Tracie i have classical PKU. Sure id love to chat. im not on here much i use facebook and msn mostly. well and pkuboard.info but i guess i will hve to remember to come here lol. I struggled with my pku alot growing up and was always very unhealthy. now i have really good levels and a higher tolerance. i have 525 mh phe daily or 35 exchanges. I drink the xphe maximum (liquid) orange tetra packs! how about you?

    #7618
    Avatar of Tracie
    Tracie_PKU
    Member

    Hey there,
    I was so excited to see you respond .
    Thank you
    I am Borderline PKU so iam allowed 60 grams of
    protien a day.Just not from any meat or chicken
    or anything good.LOL
    I am a veggie,and eat regular cheese.
    Which is fortunate.
    I can also eat tofu as well,but over all i just count my protein intake.
    I have been on Phenex 2,but now my Dr. wants me to start Kuvan.
    I am a little nervous i don’t take pills well.
    I’ looking at about 40 to 60 a day.
    I get nervous cause i feel full off of just formula,and i tend not to eat.
    Which is not good.
    So i try to do my best.

    I also have a team of Drs. for my Anorexia,but overall doin good.

    Hey where do you live at?
    I am in Asotin Wa. town of 1100, and mostly children.
    I am the only one local with PKU.
    So i tend to have to educate the DRs. as well as my Dietition.LOL

    Anyways talk to you soon.
    Take care,
    Friends,
    Tracie-PKU

    #7751
    Avatar of Amanda
    Amanda86
    Member

    hello tracie, sorry its taken me so long to respond with all the other pku forums out there now i tend to forget about this one. anyways yes i am 22 and i live in Victoria BC Canada. Its on vancouver island. For my PKU treatment i have to travel to Vancouver every 6 months. I am on 325 mg/phe daily or 35 exchanges. I do pretty good cause i bake alot of low protein foods and freeze them for the week. I also love my veggies. I drink the Xphe Maximum orange tetra packs. There just like drinking juice boxes i love them. I am pretty well known in my community since i do a lot of charity work. I am working on 5 events for next year. I am organizing a walk-a-thon, a pku info day, a dance, and im working on producing a newsletter and a documentary. anyways it was nice to chat with u again.

    #7753
    Avatar of Tracie
    Tracie_PKU
    Member

    Hi Amanda-Christine, nWow you are pretty busy.Thats awesome!
    I am actually just starting to do alot of volunteer talks at schools regarding PKU,and Anorexia.
    In my community i am the only one with PKU so alot of Drs out here find it very exciting. nMy family Prac is one who is not familar with PKU at all so i am actually educating her and her staff on it.LOL
    I just started Kuvan,but don’t feel much different.Plus its only been awhile so hopefully i’ll feel something soon. nAlso i just had my PHE check done,and should know what my levels are in a day or two.
    Anyways keep in touch its been great talking with you. nTake care!
    Tracie-PKU

    #7756
    Avatar of Amanda
    Amanda86
    Member

    lol hey again . sounds like fun. my family dr dosent no anything about anything so im actually thinking of firing him. however my PKU Clinic staff are amazing and i dont think i could do it with out them, they are who inspired me to get into health care! how long have u been on Kuvan now??

    #7757
    Avatar of Tracie
    Tracie_PKU
    Member

    Hey there,
    I have only been on Kuvan 4 days i and take 5 pills a day with Phenex 2.
    I am finding out however that Kuvan gives me heartburn,and i have never had that before. nBut besides that i feel great.I don’t care for my formula ir is nasty,and i would like to try something new.
    I don’t have a nutritionist yet.My family Prac is finding me one close to home.Thank God!
    It is funny when i go to see my family prac. the entire office says (theres that girl with PKU).What is funny is i am older than there staff,but i look like a kid to them. nThey all ask me what kind of food i eat,and how much medicine i have to take to get enough protien.LOL nThen they were all amazed that when i first had an appt with them my PKU Dr. paid for my entire visit,and had my blood flown down to him in La Ca. to get my levels checked. nThat was amazing to the staff there,cause they said we’ve never had a Dr. pay for a patients entire visit.I told them he actually cares about his PKU patients,and there well being. nFunny Huh! nHey i have aquestion for you have you ever been told off of your PKU Dr. that your brain might be swollen?
    I am being told that off of my Dr.,but i’m not to sure how to take it or how i should feel.
    I do suffer with severe headaches,and my eyes hurt,and get blood shot,but i didn’t think anything of it.What do you think?
    I will talk to you later.Keep in touch. nBy the way i am 6 hrs away from Canada border. nHow cool is that!
    PS nDo you like hockey(Ice)? nMy family (Hubby,Me,and Daughter)Are freaks for nit,and we are going to try to go to a game in Canada.
    Take care, nTracie-PKU

Viewing 8 posts - 1 through 8 (of 8 total)
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