PKU.com Community Discussion Forum Parent support Hi from Cornwall England

Viewing 13 posts - 1 through 13 (of 13 total)
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  • #7693
    Avatar of Sue
    suepkutalks
    Member

    Ive been browsing for a couple of weeks and thought I would say Hi to everyone. My son Ben is 12 years old and has pku. I was wondering if anyone has tried this new drug Kuvan, we dont get much info on it here in little old England. Ben isnt too interested in chatting about his PKU online himself yet, I guess it’s his age, hopefully he will when he’s a little older.

    #7694
    Avatar of Tracie
    Tracie_PKU
    Member

    Hi Sue,
    I am Tracie i as born in Manchester England back in 1969.I know i’m old.LOL
    I am PKU,and when my MUM and Dad found out they moved to the states being i was first generation.
    I have Borderline-Pku,and my Doctor says i have a rare mutation that Kuvan would benifit me.
    I accepted ur friend req.,and maybe i can help ur son. nBless his heart its hard when ur a child,but it does get easier when u grow up. nMay i ask what kind of PKU does he have?
    If u are interested in Kuvan have his Dr. talk to u to see if it would benifit him! nThen have him (His Dr.) contact Biomarin (that is the maker of Kuvan),they will send u a 45 day free trial.(I can give u the # too.) nKeep me posted,and i will find out any and all info for u.
    I am a strict Vegitarian,but i’m allowed 60 grams of protein a day or 2700 PHE’s.I don’t eat no meat,fish of any kind.So i eat tofu,cheese,and lots of veggies. nHang in there.
    I’m here for u and ur son.
    I found out that the more knowledge u can have about PKU the more its easier 4 ur whole family. nTell your son he can do anything He wants in life.He just eats a special diet. nThats it.(If he wants to talk i’m here 4 him) nCurrently i take Phenex 2,and about 45 pills a day,but when i start Kuvan it will take me down to 10 pills aday.(thank god)
    Take care, nTalk to me anytime. nYour Friend, nTracie-PKU

    #7695
    Avatar of Breanna
    BreaMarie91
    Member

    Hi Sue,
    I have been on Kuvan for a year now. Since beginning Kuvan my phe tolerance has gone from 300 mg of phe to 1030 mg of phe and my formula intake has decreased a little bit. I have two sisters who also have Classical PKU. Erica is ten, but she choose not to try Kuvan and Genavieve is three months.
    If you ever want to talk to me feel free to message me! nBre

    #7696
    Avatar of Tracie
    Tracie_PKU
    Member

    Hi Bre, nHow are you doing?Good i hope!
    I am getting ready to start my Kuvan,and i am really excited.I get to cut out 2 other pills that i take that total 28 pills a day.Plus i asked the Dr. on the quantity of the pills(Kuvan)I think he mentioned 10 pills aday,and i may not have to take the Phenex 2.
    I am so happy to hear that as well.
    I’m going to start them in a week,then do a PHE check,and if its low enough i wont have to take anything else.
    I do have a question 4 u?
    Is there alot of vitamins in Kuvan? nLike we would get in our formula?
    If not what do u suggest?I want to try something different,and hopefully tastey.(I know thats a long shot)LOL
    Anyways take care talk to u soon.
    Tracie-PKU

    #7698
    Avatar of Breanna
    BreaMarie91
    Member

    No, there are no vitamins in Kuvan. Kuvan’s only purpose is to kick start the enzyme in our bodies that don’t work (PAH) so that we can break down more phe. It is only meant to decrease phe levels and doesn’t act as formula. My formula intake did decrease when I began Kuvan, but only a little bit. I think the main reason I don’t have to take as much formula is because I am able to eat more protein from foods and I don’t need to consume as much protein from formula.

    #7699
    Avatar of Tracie
    Tracie_PKU
    Member

    Thanks Bre for the info.
    I will talk to my Dr.,and see if i can’t change out my Formula.Maybe something up to date might taste a little better.
    Anyways take care talk to you later.
    Tracie-PKU

    #7715
    Avatar of Sue
    suepkutalks
    Member

    Hi Tracie thanks for accepting me, Ben is a classic pku and he’s on about 10 exchanges a day at the moment. He’s had a look at this website with me and has shown some interest in reading what people have to say.
    I will speak to his dietician the next time we meet with her about Kuvan, I don’t know if the drug is available to pku’s in this country yet, I will let you know as soon as we find out.
    I read a report online(NSPKU)UK website that said that Kuvan lowered phe levels in the blood but there was no evidence that it actually stopped the build-up in the brain. Is there any evidence to support this in the USA?
    It’s 11pm now so I must log off and get to bed, I will check back tomorrow.
    Bye for now

    #7716
    Avatar of Tracie
    Tracie_PKU
    Member

    Hi Sue,
    I just wanted to let u know i left u a message on our friends list.I hope u find it useful,and i will do anything to help u and your family.Tell Ben i said HI! nAnd my daughter is bugging me to HI! nHer names is Gabriella 10 yrs old going on 30yrs old
    Talk to you soon,and sleep well, nTracie-PKU

    #7717
    Avatar of Breanna
    BreaMarie91
    Member

    Hi Sue,
    I know you said Ben is still not completely comfortable with talking about his PKU online, which is perfectly fine. If he does change his mind I have a little sister, Erica, who is ten and I am sure she would love to talk to him!

    #7722
    Avatar of Tracie
    Tracie_PKU
    Member

    Hi Sue, nHows it going in the old UK?
    Is Ben getting a little more comfortable with his PKU?
    I hope so it definitly will come in time. nPlease tell him i said Hello. nAnd how about you? Are you doing ok?
    Talk to you soon, nTracie-PKU

    #7729
    Avatar of Sue
    suepkutalks
    Member

    Hi Tracie we are all fine, ben is actually ok about his pku he just didnt show much interest in speaking on this talk site at first, although he does have a read when i’m on sometimes now and is interested in what other pku’s have to say, which is an improvement. He’s at football training at the moment, which is his favourite thing to do, he trains every saturday morning and has a game on sunday morning, its wet today (haha sunny Cornwall) so he will come home really muddy no doubt. Hows it goin with the kuvan, have you had many side effects with it? Do you know anything about the peg-pal treatment thats being tested out there at the moment? It sounds really exciting news for pku’s!
    Speak to you soon
    Sue

    #7739
    Avatar of Tracie
    Tracie_PKU
    Member

    Hi SueandBen,
    I hope your not to muddy Ben,but i bet its a blast!!! nAnyways I actually start Kuvan next week.
    I have been having some migrains latley,and Dr.Koch(PKU DR.)says it will all go away when i am able to start it.(Thank God)
    I cannot wait to start it. nMy Mum and Dad had the exact PKU gene which i guess is very rare.I am L348V/L348V. nSo the doctor says i should benifit from the nKuvan.My body breaks down some protein,but they don’t know how much and how fast.
    I get my PHE level tested this Tuesday.I am praying its low,but who knows.Dr.Koch thinks my brain maybe swollen due to lack of protein,but i also have a miss-alligned jaw,which requires surgery. nSo i think my headaches are from my jaw,but we will definitly know something in a week or two. nKeep your fingers crossed.
    Its getting late,and i will stop or i’ll keep going forever.
    Take Care,and stay warm. nGoodNight to you all.
    Tracie-PKU

    #7748
    Avatar of Sue
    suepkutalks
    Member

    Hi Tracie I’m sorry to hear that you’ve been having headaches I hope they sort them out for you. Can you tell me why they think you have a lack of protein, doesn’t your protein supplement give you all that you need?
    I guess you have had your levels tested by now let me know what the result is.
    Ben came back very muddy but he enjoyed every minute!!
    What do you think of your new President Barack Obama, do you think he will be good for your Country?
    Let me know how it goes with the Kuvan
    By for now
    Sue

Viewing 13 posts - 1 through 13 (of 13 total)
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