kuvan side effects

kuvan side effects

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kuvan side effects

June 11, 2010 in Uncategorized

I'm just curious for those who are on Kuvan or has children on Kuvan how much is their dosage?? Did they start you off at 10mg/kg per day?? My daughter started Kuvan in December 09. She took 900mg per day or 20mg/kg per day. She is 10 years old and weighed 100pds. Side effects/ or just things that occured after taking Kuvan was headach(which went away) rapid weight loss ( 20lbs in 4 months) continuos infections that spread, very swollen throat, and they reoccured with the antiobotic not working. The infections did not go away untill Kuvan was temporary stopped. She also had several incidents of loss of breath/trouble breathing. I stopped Kuvan because the breathing problems kept getting worse. I thought it was probley new exposed allergies/asthma but she never had them before. When i took her the Dr. said she has asthma and respritory failure because she was taking way too much Kuvan. She should of been on 10mg/kg or 400mg per day but she was on over twice that much. I trust my nutritionist and prescribing doctor and I believe they made the right decision by giving her that amount and i trust that they know what they are doing, but why would this doctor say this??? He also said she could start 400mg per day again but i don't think i want her too. Her baseline level was 9 which is high and that might be why they gave her the maximum dose but this other dr said it was overdosing her for 4 months. I trust my Dr. but would just like to get someone else's opinion, and see what everyone else is taking in dosing?? Thanks

2 Reviews of kuvan side effects

  1. Registered: Jun 27, 2009

    Posts: 0

    , New York

    Molly is 9. We started the dose low and worked our way up over the course of a few weeks. She was taking 6 pills a day (600 mg), but was just increased to 7 pills last week due to a growth spurt. She weighs about 85 lbs. She experienced some stomach pains the first few weeks on Kuvan, but they got much better in time.


  2. Registered: Sep 12, 2006

    Posts: 0

    Franklin, Wisconsin

    When I started Kuvan my doctor immediately started me at the highest dosage, 20 mg/kg. Up until recently this put me at nine pills a day (900 mg) as I don’t weigh much more than your daughter. A couple of months ago my doctor increased me to ten pills (1000 mg). I will be coming up on three years of taking Kuvan soon, and as far as I can tell I have not experienced any side effects.

    Have you been able to rule out the possibility of your daughter being allergic to one of the ingredients in Kuvan? Good luck in whatever you decide to do.

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