menkes disease ASAP please???

April 21, 2005

Hi Everyone:

I have a favour. I have a Caring Bridge friend whose son has Menkes. Can anyone tell me (tonight)if this is a mito or just metabolic disease? Does anyone have experience with it. Another mom suggested that this boy could be experiencing acidosis but I'm not very familiar with acidosis. If anyone has a minute, could you tell me what it is and what the signs are? I think it's elevated lactic acid in the body but don't know what the symptoms are. Kirkland's lactic acid has always been normal.

Thought I'd toss it out to the pros in hopes of helping her.

Thanks bunches,

luv and Kirkland Complex One Def. 4 yrs

www.caringbridge.org/canada/kirklandk/

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April 21, 2005

Acidosis could mean different things depending on which type they are

speaking of. Asenath deals with a lot of metabolic acidosis while Zipporrah

deals with the lactic acidosis. Both basically mean the acid levels are off

and can cause serious health issues (as you know). Metabolic acidosis can

shut down major organs, especially the heart. It throws off the blood

system and causes ketosis issues. (I know I am bad at explaining this and I

am sure others can do much better here. Lactic acidosis can cause lots

of problems and often shows itself with lots of muscle pain. Again, I am

sure others can help you better here. Just wanted to let you know there are

different types of acidosis.

See www.caringbridge.org/ia/mitomomof9 and www.heartbeatsformito.org (a

photo look into Mito)

Darla: mommy to

Asenath (5) Mito, CNS Vasculitis, strokes, migraines, seizures, G-tube,

hypotonicity, disautonomia, SID, global delays, cyclic vomiting, bladder

issues, some wheelchair use, eye issues, gastric emptying issues...

Zipporrah (17 months) Mito, strokes, neuro-motor planning, SID, GERD,

dysphasia, G-tube fed, speech delays, extreme fatigue, aberrant subclavian

artery, disautonomia, hypertonicity, migraines, possible seizures, dumping

syndrome, iron deficiency...

Luke (17)migraines, sensory issues, & some evidence of SLE's...

Leah (14), Rachael (13), Isaac (11), Tirzah (8), Kezia (4), Marquis (3)