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Jo-Anne K.-Mito cocktail and stinky urine   Message List  
Reply | Forward Message #55314 of 100018 |
Re: [Mito] Re:Jo-Anne K.-Mito cocktail and stinky urine

Hi JoAnne
 
I was wondering if you could please send this info to me as well?  We're still looking for answers for Maddie, and have just begun looking at FOD's. She's had some things off in her amino acids, but nothing so far off that her local metabolic doc is concerned.  Thanks!
 
Holly Rubio
----- Original Message -----
Sent: Monday, October 31, 2005 9:02 PM
Subject: [Mito] Re:Jo-Anne K.-Mito cocktail and stinky urine

Hi Darla,

I forwarded some information off list.  It has to do with some of the
other, far less common, amino acidurias and organic acidemias (all
inter related to FODs.  I stumbled across this accidently when my
girls had some very atypical abnormalities in their blood work.  It
goes pretty far back in the metabolic process.  The result is related
to solvant vs ketone odors.  Rare but possible.

--- In Mito@yahoogroups.com, "Darla Klein" <honeybear50317@m...> wrote:
>
> Why is this a symptom of a FOD?  Any info very welcome here since I
haven't
> had much luck solving the issue through Mito doc.
>
> See www.caringbridge.org/ia/mitomomof9 and
> www.heartbeatsformito.org/smiles.htm
> Darla: mommy to
> Asenath (5) Familial Hemiplegic Migraine (FHM), possible Mito, CNS
> Vasculitis, strokes, seizures, G-tube, hypotonicity, disautonomia, SID,
> cyclic vomiting, bladder issues, eye problems, gastric emptying
issues...
> Zipporrah (2) Probable FHM, possible Mito, strokes, SID, G-tube,
extreme
> fatigue, aberrant subclavian artery, disautonomia, possible seizures,
> coma/consciousness issues, dumping syndrome...
> Luke (17) Probable FHM, SID, Strokes...
> Leah (15), Rachael (13) Isaac (11), Tirzah (9), Kezia (4), Marquis (3)
> Joey (22 months) CP, severe hydrocephalus, dysgenesis of the corpus
callosum
> , G-tube, GERD, immobile, severe dev. delays, quad...
> Christina (22 months) Prob. CP, Dev. delays, seizures...
>






Wed Nov 2, 2005 1:44 pm

hollyrubio
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Message #55314 of 100018 |
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Why is this a symptom of a FOD? Any info very welcome here since I haven't had much luck solving the issue through Mito doc. See...
Darla Klein
honeybear50317
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Nov 1, 2005
12:25 am

Hi Darla, I forwarded some information off list. It has to do with some of the other, far less common, amino acidurias and organic acidemias (all inter...
joannekocourek
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Nov 1, 2005
4:03 am

Hi JoAnne I was wondering if you could please send this info to me as well? We're still looking for answers for Maddie, and have just begun looking at FOD's....
Holly Rubio
hollyrubio
Offline Send Email
Nov 2, 2005
1:44 pm
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