Muscle Biopsy GONE!

[Guest guest]

Dr. Whiteman informed me the other day that he discovered why we hadn't

heard anything back from the muscle biopsy. Without his knowledge or

approval, the Mayo laboratories decided to NOT send Zipporrah's biopsy on to

Buffalo. They felt it didn't have enough variation to send it on even

though they are NOT the professionals in the Mito area. I am so ticked

about this as we have waited over 9 months to hear back about the biopsy

with many requests for them to FIND out where it was and now after this

long, if there is actually some muscle left, it is not worth it to send it

on as it has been frozen for so long. I think it is absolutely atrocious

that my daughter had to suffer through the healing of this procedure only

for someone to decide NOT to send it where they were told to. So our hope

of getting a definitive complex is gone. We cannot go somewhere else and

don't want to at this point anyway, but I am in shock that this happened and

that Dr. Whiteman didn't know about it sooner. Where was the

communication??? Don't get me wrong, I love Dr. Whiteman and he is very

caring and thorough, but he is just too busy to know what is going on

lately. He doesn't have a personal nurse that can return calls and it is

really starting to affect the care he can give his patients. It isn't his

fault but Mayo's fault. They need to do something about the situation

before Dr. Whiteman too joins the rank of the other Mito docs who either

retire or cut off new patients or does diagnostics only. He is very

frustrated with his circumstances lately. I feel bad for him, and yet am

frustrated that my girls' care is being compromised in some manners due to

his lack of time. As large as Mayo is, the fact that he is the only

full-time Geneticist is unacceptable and ridiculous!

Sorry to vent, but I am understandably disappointed.

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)