Does anyone have any experience of a child with fibro muscular dysplasia. My 7 year old son was diagnosed with fibro muscular dysplasia 2 years ago. The arteries in his kidneys have been affected and he is on medication for high blood pressure. He sees a consultant nephrologist every 6 months and the blood pressure is under control. However, I know the disease can effect other arteries and therefore other organs in the body and can cause a variety of symptoms.
Recently he has started complaining that his leg hurts and on his last check up I was told he had lost weight. He is much thinner than other boys his age, like Mowgli from the Jungle Book, although he eats well.
I am worried that the fmd might be progressing or that I might not recognise potentially significant symptoms. Does anyone have any experience of this disease in children.