msud

[Hapus]

Hi there all,
My nephew suffers from a rare metabolic disease called Maple Syrup Urine Disease. After many touch and go situations as an infant, he is now a (relatively) healthy eight year old. He is allowed 16 grams of protein a day, (this has increased from 2 as a child). I was wondering if anyone out there has any experience of these children as they grow up - as my sister was told his life expectancy would be 11, however, that is regularly being pushed higher and higher when he has his three-monthly hospital visits. In addition, she was also told that most of these sufferers tend to have some degree of learning difficulty, however, he been lucky and does not have any LD. The only problems we have are when he catches illnesses from other kids - these put him in hospital. Does this lessen as they get older?

[~owzat~]

Hi Hapus,

http://www.patient.co.uk/showdoc/40001507/


Don't know anything about msud, myself, possibly someone on here will know. However, hope this link helps you...

[Hapus]

Hi owzat - thanks for that - we have read up endlessly on the disease (not always a good idea I can tell you! Too much information). Its more the real experiences from the real world I'm after. What have people experienced with MSUD sufferers as they become teens etc.