Re: Ruth- Muscle Biopsy GONE!

[Guest guest]

I don't even know what to think or do. I was in shock when Dr. Whiteman

told me. I don't think it would help much to complain (in the sense that it

won't bring the muscle back) other than perhaps prevent it from happening to

someone else in the future. In that case it may be worth a formal

complaint, but just not sure if I really want to get on more Mayo person's

nerves. The last hospitalization I had to be strong and firm to protect my

girls and felt their care was not taken seriously and found out later that

noone even communicated to Dr. Whiteman about the trouble we were having.

We never saw a Geneticist or a Neurologist in the hospital even though

Asenath had a stroke while there. That hasn't set well with me as this

hasn't. I unfortunately have so many issues I could complain about that I

am somewhat lost as to IF or for WHAT I should prioritize and complain

about! Still trying to absorb the news at this point I guess and not even

sure WHO to complain to!

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: Muscle Biopsy GONE!

> Darla,

>

> This is horrifying. I am appalled beyond words. Do you have any options

> for

> recourse?

>

> ruth

>

[Guest guest]

I don't even know what to think or do. I was in shock when Dr. Whiteman

told me. I don't think it would help much to complain (in the sense that it

won't bring the muscle back) other than perhaps prevent it from happening to

someone else in the future. In that case it may be worth a formal

complaint, but just not sure if I really want to get on more Mayo person's

nerves. The last hospitalization I had to be strong and firm to protect my

girls and felt their care was not taken seriously and found out later that

noone even communicated to Dr. Whiteman about the trouble we were having.

We never saw a Geneticist or a Neurologist in the hospital even though

Asenath had a stroke while there. That hasn't set well with me as this

hasn't. I unfortunately have so many issues I could complain about that I

am somewhat lost as to IF or for WHAT I should prioritize and complain

about! Still trying to absorb the news at this point I guess and not even

sure WHO to complain to!

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: Muscle Biopsy GONE!

> Darla,

>

> This is horrifying. I am appalled beyond words. Do you have any options

> for

> recourse?

>

> ruth

>

[Guest guest]

Darla, im so sorry to hear about this dilema, and that your child

had to suffer for nothing now. Would the Clinic be willing to

rectify this abominable mistake, by thier paying for a blood

biopsy??? By no means should she have to go through another mucsle

biopsy because of their lack of responsibility. The blood biopsy is

very expensive i know from experience, as we are waiting on our

application of waiver from Athena labs who does the studies of fresh

and frozen blood biopsy and they do not want to take insurance so it

is out of pocket, $11,000 to be precise, your cost upfront would be

$4000, and i would think and this is only my opinion that, their

paying for this procedure which will take all of 5 minutes to drawl

her blood, still wouldnt equal all she went through and what you and

your family went through before, during and after her biospy. But

at least it will help with finding the answers needed for treatment

and care of her. Just a thought, who knows maybe if your talk to

doc Whiteman he would agree that the clinic should pay for this, its

worth a shot, ya never know miracles do happen!! Again so sorry

for the pain and suffering and now anguise your are going through.

Barb