PKU.com Community Discussion Forum Parent support Anyone know about Kuvan?

Viewing 15 posts - 1 through 15 (of 32 total)
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  • #6986
    Avatar of Monte
    Kans_PKUDad
    Member

    Anyone heard of this new Kuvan that is out? My daughter is 6 with PKU and we are always looking for more things to help her out with her diet. Anyone care to tell us what they think?

    #7077
    Avatar of Marie
    jammnm
    Member

    Hi
    I do not know that much about Kuvan but there are a lot of people on the listserv that have info about kuvan. Sorry I could not be more help.

    #7078
    Avatar of Breanna
    BreaMarie91
    Member

    I’m actually on Kuvan. It has helped a lot because before Kuvan I was allowed 300 mg of phe and I’m not up to 1030 mg! The only problem is now I’m finding it hard to get all that phe in because honestly I like my low protein foods better. And I’m only getting 650mg of phe through food and the other 380 is coming from milk mixed into my formula. Lol, so I can’t even get in double what I was allowed before.
    What would you like to know about Kuvan? I’ll help anyway I can. nBre

    #7095
    Avatar of Sarah
    HappyMom
    Member

    Wow Brea! I’m so happy that Kuvan is working for you. That’s so interesting that you like your low protien food better. I really think Easton feels the same way when it comes to some foods. Unfortunately Kuvan would not benefit Easton due to the mutation he has. How is your mom doing? I’m also expecting a new baby. I’m due this October.
    Sarah

    #7098
    Avatar of Breanna
    BreaMarie91
    Member

    Hey Sarah,
    Bridget told me she didn’t think I would like a lot of new foods. The only things she thought I would like are foods that I’ve had on occasion when I was little and she was right. I only like regular bread because my dad gave it to me every once in awhile when I was little.
    When I’m offered pasta I expect it to taste like my low protein pasta because that is what I grew up on. Regular pasta defintally does not taste like mine!
    That’s so exciting to hear your having another baby!!! My mom is doing good, besides some side pain. We found out the baby is a girl (AGAIN), so my mom went out and already started buying things. nBre

    #7122
    Avatar of Kari
    jakob_s mom
    Member

    My son started taking Kuvan just about one month ago. He’ll be eight year’s old in May and has been classified as a hyper-phe. The Kuvan has been wonderful for him, he was permitted 375 mg phe/day and we are currently at 1500 mg phe/day and hope to increase that after this week’s blood draw. As mentioned in another post I am having a bit more difficulty getting the additonal phe into him but we are working on it. His face just lit up when he was able to eat a chicken mcnugett happy meal from McDonald’s! He has not had any issues with an upset stomach, headaches etc which are outlined as possible side affects from taking the Kuvan. He takes two pills a day, in the evening after dinner. The people with BioMarin have been fantastic to work with and took care of all of the insurance information as well.

    #7126
    Avatar of Breanna
    BreaMarie91
    Member

    I know what you mean. Like Jakob it has been hard for me to get all my phe in. BUT that is probably because I haven’t tried to many new foods lol. I’ve tried regular bread, pasta and tortilla. But like I said, I don’t even like regular pasta. At the end of the day I always have to add regular milk to my formula to get my phe in.

    #7215
    Avatar of Amber
    cjqa2007
    Member

    My son will be 6 in November. We started the Kuvan a week ago. So far no changes in his blood work. I am so happy for those of you that show so much of a jump in phe you are able take in. My son is considered hyper phe (depending on the dr). His levels are about 4.6 and takes in about 500mg phe per day. I am cautiously optomistic about the kuvan since they say it only works in about half the cases of pkuers. I will keep everyone posted as to our experience.

    #7221
    Avatar of Breanna
    BreaMarie91
    Member

    Good luck with your son and Kuvan! I hope he responds!

    #7227
    Avatar of Amber
    cjqa2007
    Member

    Well we are now in our second week. We did the blood draw yesterday and anxiously awaiting the results to see if there are any changes thus far. Last week was the first week and there was no real change in his levels.

    #7247
    Avatar of donna
    catcocoa
    Member

    this is a qustion for bea did you have any side affets from kuvan. iam takeing kuvan this sat for the first time and iam a little skared to take it. i think it is grate that it is working so well for you. iam praying that kuvan will work that well for me. can you please let me know.thank you

    #7248
    Avatar of Breanna
    BreaMarie91
    Member

    When I first started Kuvan I did have problems sleeping. For probably 2 weeks I went from never sleeping at night to wanting to sleep all day. BUT we’re pretty much 100% sure that is just because of the quick drop in my phe levels. Since I got my levels stable again I’ve been perfectly fine! Good luck with Kuvan! I hope it works for you.

    #7250
    Avatar of donna
    catcocoa
    Member

    bea i want to thank you so much for leting me know about kuvan and how you felt on kuvan. if you have any more info and incurgement and anyone else that is takeing kuvan please let me know and again thankyou.
    catcoco

    #7256
    Avatar of Amber
    cjqa2007
    Member

    Just updating you on what is going on with Kuvan here. My son has been on it almost a month now. We haven’t noticed any side effects and he hasn’t complained of any either. His phe levels are dropping. 2 weeks ago they were at 1.1 and then this last week it dropped to .7 Now we are adding some more phe to see how much more he is going to be able to take. Its kind of exciting seeing how well it will work etc.

    #7258
    Avatar of Breanna
    BreaMarie91
    Member

    I’m glad to hear your son’s responding! Let us know how much more phe he’s allowed when you figure it out. I know figuring out phe tolerance is a long process because we just figured out my new tolerance about a month ago…and I started Kuvan in October!! nBre

Viewing 15 posts - 1 through 15 (of 32 total)
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