my 9 year old has PKU and will be starting Kuvan

my 9 year old has PKU and will be starting Kuvan

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my 9 year old has PKU and will be starting Kuvan

July 21, 2009 in Uncategorized

I am hoping there is someone that can relate. I have a 9 year old daughter wilth PKU. She was diagnosed at 2 weeks old. She was on a strict diet untill she got to be 4 or 5. Her levels always stayed low, so we started to add new things to her diet. Happily, her level continued tio be low even with eating pasta, cheese, milk, breads but at a restricted level. She continued this way for a couple years. Then we gradually stopped monitoring her levels, thinking it would be O.K since her level never got high. A couple weeks ago we decided to see if she was suitable for Kuvan so she had alot of tests done, including her level. Now it is 16!!!!!!! I don't understand how it can jump so high just in a couple of years, and while she was on the same diet. This is very upsetting to us because now if and only if the Kuvan works then she will still have to stay on the same diet she was on before the Kuvan, or maybe even less. If the Kuvan does not work she will have to be on a stricter diet that she is not used to. I am also very worried about her having side effects from her level being so high over the last couple years. I feel like I failed as a parent. A new severe adverse reaction to Kuvan is spinal cord injury!! Does anyone know why that would be, and what the spinal cord would have to do with Kuvan?

2 Reviews of my 9 year old has PKU and will be starting Kuvan

  1. Registered: Jul 22, 2009

    Posts: 0

    Fairhaven, Massachusetts

    I am so sorry you have gone through this. You certainly did everything you thought was fine. You would never have knowingly done things to increase her level. Are you working with a clinic now? I hope they can work with you and your daughter to get her on a good path no matter what the Kuvan outcome. I had not heard of the spinal cord issues. Where did you hear about that?
    The other thing to remember is that she is 9, not 19. You have time to work with her on her diet. Even if it has to be restricted, she is still at an age where she can change (although she won’t be happy all the time I am sure.)
    Keep up the great parenting! You caught this now, just remember that!

  2. Registered: Apr 24, 2009

    Posts: 0

    Cornwall, New York

    I agree 100 percent with you MassPKUMom… Do not blame yourself for not knowing how high your daughter’s levels went… I am 24 and have PKU myself… I did not ever go off diet with foods, however when I was in 4th grade to 12th grade, I did not drink my formula… This resulted in me being severely protein deficient… Because of that, it increased my levels signficantly to about 14 or 15… I was at the age (12th grade) that I understood the harmful effects it had on my body so I was able to change… I understand your daughter is only 9, however she is young enough to teach her what is good and what is bad.. I look at it this way… there are several “food allergies” out there today and kids are told all of the time they have restricted diets… teaching her good versus bad foods is the best way to go… explain to her that if she follows a low-pro diet during the week, you will allow her to eat her FAVORITE foods one day on the weekend… make it as a team for you and her to get through this…

    Also, I have been taking Kuvan for 2 years… this has lowered my levels significantly.. There is 60 % chance your daughter will respond to it… I think it is worth the shot to try to get her levels lowered.. I work very closely with BIOMARIN and have not heard about the spinal cord injury being a side effect? That does not mean it is true… Can you possibly tell me where you saw this information and hopefully I can find out whether or not this is true? Like I have said, Kuvan has worked for me and it is worth the shot! I wish you and your daughter the best of luck…

    If you ever should need any help or advice, please do not hesitate to ask me! Keep up your strength. You and your daughter will get through this and find something that works best!

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