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My info on sense of smell in CHARGE:

1) We noticed the lack of smell in several kids long ago.

2)Autopsy on some kids showed lack of brain development in the smell

area (arhinencephaly) in a large proportion of kids

3) yes, , it would be a cranial nerve problem (its listed in the

managment paper) and it makes sense

4) Casey - you said " smells " ammonai - thats not the best " smell "

to use, as a test - it is also very volitile and burns the nose tissue a

bit. the reaction may be to that and not to smell.

5) we tried to test smell on several kids iwht CHARGE years ago - it was

tough to come up with non-irritating but strong smells. And since so

many of the kids are tube fed, they wouldn't necessarily have the same

reaction to food smells as other children.

Meg

Meg Hefner MS

Genetic Counselor

St. Louis MO

meg@...

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