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Question about maple-syrup urine smell

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A friend (w/an ASD son age 5, same as mine) and I were talking and

found out (inadvertently) that both of our boys have urine that often

smells like maple syrup. I had looked this up on the Internet when I

first noticed it (when my son was about 2) and found an organization

for MSUD ( " Maple Syrup Urine Disease " ). I read the description of

the symptoms of MSUD and it sounded nothing like my son (it's a VERY

serious disorder). However, when I found that my friend's son has

the smell also, I e-mailed a representative from the MSUD group. She

e-mailed me back yesterday and said that she has had many other

inquiries from parents of autistic children who have none of the

severe symptoms of MSUD, but do have the smell. She also said that

one of their group members is a dietician for children with MSUD and

has an adopted son who is autistic and has the maple-syrup smell but

not MSUD. This woman is trying to find a doctor who will research

this issue.

So my question is, does anyone else have a child whose urine smells

(either all the time, or just occasionally) just like maple syrup?

If so, would you e-mail me (mbilek@...)? I'm on web-only, so

you'll have to e-mail me directly rather than replying to the list.

MSUD is caused by a lack of enzymes that break down certain amino

acids and I'd like to know if some of our kids have a similar (but

not identical) problem. BTW, I'm posting this to a couple of other

lists I'm on to try to get more input, so if you see it twice, I

apologize for taking up your time.

- Becky Bilek (Indiana)

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