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Re: WORRIED MOM

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The vomiting could be cyclic vomiting which is common in Mito and often

doesn't seem to have a diagnosable reason. My 4 year old daughter, Asenath,

has been having the same problem since May of this year. She has migraines

and seizures, though controlled presently, among other issues like your

daughter also.

I have a 12 month old daughter, Zipporrah, who in some ways is worse

that her 4 year old sister and some ways better, so I understand what you

are talking about. Asenath and Zipporrah have many similarities and yet are

affected by different issues as well. Asenath has a life-threatening

disease called CNS Vasculits which Zipporrah does not have. Zipporrah on

the other hand has no ability to eat orally, has tracheal issues, gastric

dumping and malabsorption, and major sensory and neuro-motor involvement.

All combined Zipporrah seems to be much more complex than Asenath and yet

the narrow arteries in Asenath are very serious.

Hope this wasn't confusing. I just wanted to let you know that someone

understands. Feel free to ask the group any questions you may have. The

group has a wealth of knowledge. :)

Darla: mommy to

Asenath (4) Mito, CNS Vasculitis, strokes, migraines, seizures, G-tube,

hypotonicity, disautonomy, SID, dev. delays, asthma, cyclic vomiting...

Zipporrah (11 mon.) Mito, strokes, neuro-motor planning dysfunction, SID,

GERD, 100% G-tube fed, asthma, trach issues, aberrant subclavian artery,

disautonomy, hypo & hypertonicity, migraines, possible seizures, dumping

syndrome, iron deficiency...

Luke (16), Leah (14), Rachael (12), Isaac (10), Tirzah (8), Kezia (3), &

Marquis (2) (some with Mito symptoms)

WORRIED MOM

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> I HAVE A BEAUTIFUL SON 16MO. WHO IS AFFECTED WITH A POSSIBLE MIO

> DISEASE.HE DOES NOT QUIET SIT ,BUT HE ROLLS EVERY WHERE.HIS MUSCLE

> ARE AFFECTED,BY THIS.I ALSO HAVE A BEAUTIFUL 4 YEAR OLD GIRLNOT AS

> BAD AS MY SON,BUT IN SOME WAYS I SAY WORSE .SHE HAS DEVELOPED

> SEIZERS,VERTAGO,MIGRANES AND A UNEXPLAINABLE CYCLE OF VOMITING AT

> LEAST ONCE A MONTH.AWAITING LOTS OF TESTS. ANY IDEA?

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> Please contact mito-owner with any problems or questions.

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Sounds like you're dealing with alot, and having mitochondrial disorder as a possible diagnosis is never an easy thing. Let me start by saying welcome to our group. I'm hopeful that you will find the same support and understanding and KNOWLEDGE here that i have been blessed with over the last 6 years. Please know that no question is a silly one, and if this group of wonderfully compassionate and knowledgeable people doesn't know it, then the chances are there is someone in the gorup that knows how to point you in the right direction.

Hope you can find the answers you're looking for.

ruth

mom to Mitch (9 1/2) and Lexi (6 1/2), both mito affected and my treasures

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