Re: Re: CNS Vasculitis issue (, Ann, all)

[Guest guest]

Feel free to share our information and results with your docs if you

think it might help. The hard thing is that once we got below 4 cc/ml per

day (solution concentration of 15 ml/5 ml) she began showing ALL the same

symptoms she had before using them. Her apnea has returned, her chronic

diarrhea returned, her drained, exhausted look has returned, and worse, her

strokes have returned. I don't want her on steroids forever, but how to

know which is worse to deal with; the steroid side-effects and possible

damage to other organs, or the strokes, migraines, and other issues. We

have never been suggested to use IVIG which I find amazing, knowing how many

on this group do use it. Interesting differences in treatment plans.

See www.caringbridge.org/ia/mitomomof9 and this link to see a real look into

Mito using a photo collage of my girls at www.heartbeatsformito.org

Darla: mommy to

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

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

Zipporrah (12 months) 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)

Re: CNS Vasculitis issue (, Ann, all)

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> > KAREN: I wish your son was able to do a trial with steroids

> as well,

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> I am so thrilled for you and Aseneth...that is so awesome...

> I wish they would let us try it also....it is so frustrating...

> one of those situations where the doctor knows EVERYTHING...you know

> what I mean.....ugh...if only...

> they just keep telling me the standard treatment Now days is

> IVIG....OK well its been 9 years that we have been doing IVIG, since

> he was 10 months old and he is 9 now...lets see he developed

> vasculitis at 3...Hmmm... where did you say the IVIG would help

> doc????

> well I am so happy for you....

> keep up the good work

> hugs

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

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