Therese
Hi, can you help me with some info on homocystinuria. Is the Homocystine
level
high in urine and blood or just one of these? I have heard they diagnose by it
being in the urine but all the info I fine they talk about it being in the
blood,
I am very confused. What is a high homocystine level? I know normal is suppose
to
be around 3-6 I think. My son has several symptoms of it but because of the
blood
workup they are not sure what is going on. Any info you can send me would be
helpful.

Thanks
Clara

Therese Waters wrote:

> Teresa-
> My daughter has homocystinuria and she definitely has an odd odor to her
> urine. It is hard to describe but very distinctive. Although she is being
> treated and her levels are better, we still note the odor, especially in the
> morning, when presumably her urine is more concentrated. There are other
> metabolic and endocrine disorders that have characteristic urine odors - good
> idea to check it out. TWaters
>
> TESSABUG@... wrote:
>
> > This is going to sound weird but my daughter occasionally gets what I call a
> > "saltine cracker" odor..............does anyone else have a child that gets
> > this odd odor? She only has a clinical diagnosis of Angelman syndrome,
> > nothing metabolic. But has in the past had a few weird levels of different
> > acids. One of her peds recently reminded me of the acid levels and I
> > mentioned the odor. Now she wants me to try to get a urine sample when she
> > has this odor. She is potty trained so it should be fairly easy.
> > I just have to wait for the mystery odor to return.
> >
> > Teresa
> >
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