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 -----From: joannekocourekSent: Monday, October 31, 2005 9:02 PMSubject: [Mito] Re:Jo-Anne K.-Mito cocktail and stinky urineHi 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...
>