Susan,
I guess I'm getting very tired and having trouble thinking tonight. Is what you
had a type of nephritis?
Why did they give you ACTH, an adrenal or hypothalamic hormone-?(confused on
that at the moment)
We have something going on with the B12 too, some of us improve and some get
worse on it.
Organic acidemias, is that like the mito is a metabolic disorder that causes
acidosis? Or am I way off base trying to understand your post? I'm sorry, when
this tired my brain starts loosing it.
I know in our family there are a lot of bladder and kidney problems. When I do
B12 shots or start the lipoic (right now I can't remember which) I have these
white strings come out in my urine. I also start having this acrid smell I don't
know how to explain except it smells metallic. I have smelled it in stools and
even in Jacob's skin. I don't know what that is either, but keep telling the
Dr.s maybe they should chk it out as it seems an important clue but they don't
listen.

Also, at times (and I know this is wierd) I have something happen to my vaginal
secretions that numbs us both. It is just like novacaine feels in your mouth at
the dentist. One day Shenan and I were talking and she says it happens to them
too and she blamed Brian thinking it was something from illecit drugs he did and
she was mad at him! Now, is this something common that no one else talks about
or is it really wierd? (I'm taking a BIG chance here sharing this and I hope no
one is offended by the subject.) The Dr. said it was strange, but I'm thinking
maybe just to him so I'm asking around. You can email me privately if you want.
joelinda@... Linda S.


-----Original Message-----
From: Susan L Rump <Susan.L.Rump@...>
To: iem-family@onelist.com <iem-family@onelist.com>
Date: Thursday, August 19, 1999 3:33 PM
Subject: Re: [iem-family] Liver transplantation for MMA-children?


Linda,
As a 5-y-o, I myself had a mysterious glomerulonephrosis that required ACTH
to save me. My daughter, now almost 15, has a rare vitamin B12 IEM. Others in
our network, children with this disorder, have had kidney failure. One has a
chronic glomerulonephrosis; another died of it. So far, my girl is thriving,
though her sensory and learning problems are profound.
Is there a connection? I don't *know*; I'm "just a mom."
But I sure would bet on it. Organic acidemias, even treatable ones, put
undue stress on the organs.
Susan