CNS Vasculitis issue (, Ann, all)

[Guest guest]

I realized recently that I didn't update the group and specifically

those dealing with this issue, how Asenath's last MRA looked. We were

dealing with her being so ill in the hospital, the lack of adequate care

while there, and another stroke, so the issue slipped through the cracks.

ANYWAY...

The MRA showed that the steroids have actually been causing amazing

results! All four of Asenath's narrow arteries are 3/4 the way open! We

were so shocked and the doctors were even more shocked to say the least.

The steroids were a " last ditch hope " to stop the progression of more

arteries narrowing, NOT to open the ones that were already narrow. They

never dreamed they would open. We were told they would probably remain

narrow for her whole life and eventually probably cause a stroke or aneurysm

that took her life, if other Mito issues didn't first. We do realize the

nature of Vasculitis in that things can change and then get worse again, but

the fact that all four opened dramatically and that over the year while on

steroids she had few strokes and was so much healthier says something. Then

over the last several months while weaning her off them she started showing

signs of worsening and started having stroke episodes again, so once again

Asenath was placed back on steroids. We don't want her on them forever, but

know at this point it is for the best.

KAREN: I wish your son was able to do a trial with steroids as well,

but know it isn't possible. I thought you would want to know our results

thus far on them though.

KAREN/ANN: I spoke to Dr. Whiteman and our neurologist about the CDG

disorder and was told that Asenath was tested early on a couple of years ago

and not found to have it, so guess that is one issue we shouldn't have to

worry about. Strange that both of you are dealing with it and the

Mito/Vasculitis issues and we aren't though???

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)

[Guest guest]

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

as well,

>

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