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idebenone and dark urine

Hi, in last one month we notice that is urine of our 3,5 yr.old son becomes darker. First we checked urine infections and that is ok. We could not check myoglobinuria because our local laboratoria do not testing . Our doc suggested us to slow down with activities and to drinking much water. We do it, but his urine is still dark ( with brown and red pigment). In that period we are switching him from 150 to 300mg of idebenone ( which we are giving him from his 2 y). We did one test, we stopped giving him idebenone for 5 days and in that period his urine was normal.When we are giving him idebenone again his urine becomes darker. So, my question is: Does idebenone has influence on pigment of urine?

Thanks in advance,

Marija

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Permalink Reply by Nadja on July 31, 2014 at 5:14am

Hi marija,our son takes idebenone since 8 weeks,300mg per day.at the first times the urin was sometimes very dark,but now and the Last time it was normal.how do you give hin the idebenone?nadja

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Permalink Reply by Dalibor Randjelovic on July 31, 2014 at 11:27am

Thanks for reply.

I am giving him mixed with yogurt in the morning (open the capsules and put in yogurt with a little honey, it looks like icecream). Dark urin becomes with increasing dose of idebenone. After my doubt on this I tested him twice for about 5-6 days without idebenone and in that period his urin was normal. But also I notice he lost stability and balance for a moment in days without idebenone. Definitely Idebenone gives him more energy and stability. Now I worried, Why this happened? Does idebenone has influence only on pigment of urin or can be reason of some complication? If someone have explanation, experience or some suggestion, it will be helpful for us.

Thanks in advance,

Marija

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Permalink Reply by Nadja on July 31, 2014 at 3:51pm

Hi!can you speak German?
At monday i am in have an appointment in the biggest neurologist clinic in Germany,and i will ASK them your question.then i can write you what they say.how is your son doing?max was four in may!best wishes Nadja