Re: Rosy- Muscle Biopsy GONE!

[Guest guest]

They did do a skin biopsy at the same time, but again, I haven't heard

anything about the results and wonder what has been done with it too. I

don't want to put Zipporrah through another biopsy of any sort at this

point. The blood biopsy maybe, but I will speak to Dr. Whiteman further

about the issue.

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

>

> I am struggeling to find words to express on 'paper' about what happened

> toyou. I am so sorry.

>

> Regarding recourse: A blood or skin biopsy , if you want to, is what I

> would

> ask for. At their expense. You still have the right to get answers.

>

> Max had a skin biopsy done in September. We are still awaiting results. It

> only takes a few minutes. Compared to muscle , it is small. Is it less

> traumatic? Only our kids know. It took a few minutes and she went home

> with a bandaid

> and memories. I felt awful.

>

> It is truly disturbing to hear what is going on at the Mayo. And it is the

> best and closest for you to go?

>

> Hang in there. You are a great Mom.

>

> regards

> rsoy, mom to max, 5 1/2

>

[Guest guest]

They did do a skin biopsy at the same time, but again, I haven't heard

anything about the results and wonder what has been done with it too. I

don't want to put Zipporrah through another biopsy of any sort at this

point. The blood biopsy maybe, but I will speak to Dr. Whiteman further

about the issue.

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

>

> I am struggeling to find words to express on 'paper' about what happened

> toyou. I am so sorry.

>

> Regarding recourse: A blood or skin biopsy , if you want to, is what I

> would

> ask for. At their expense. You still have the right to get answers.

>

> Max had a skin biopsy done in September. We are still awaiting results. It

> only takes a few minutes. Compared to muscle , it is small. Is it less

> traumatic? Only our kids know. It took a few minutes and she went home

> with a bandaid

> and memories. I felt awful.

>

> It is truly disturbing to hear what is going on at the Mayo. And it is the

> best and closest for you to go?

>

> Hang in there. You are a great Mom.

>

> regards

> rsoy, mom to max, 5 1/2

>