RE: Re: Ruth- Muscle Biopsy GONE!

January 7, 2005

Darla,

I can't imagine how you felt after waiting all this time. Can you find out who made that decision and do anything about it? I am a nurse and if a doctor orders something there is no way I could take it upon myself to not do it because I didn't think it was necessary. Who paid for that biopsy that was never finished the way it was ordered? I think some heads need to roll!!!!!!!!!!!!!!!!!!!!!!!!!!

Kathy, grandma to Audrey, 3 yearsDarla Klein wrote:

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.orgDarla: mommy toAsenath (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> Please contact mito-owner with any problems or questions.

January 8, 2005

Darla,

I am so angry that I have no words. I send my prayers and hugs.

God bless,

Suhad Haddad -- Mom to Samya (Died 12-10-02 of Leigh's Synd.) & Leanna

with same disease.

Samya's Memorial Site: www.samyahaddad.com/.org/.net

Email: Suhad1970@...

Alt Email: Suhad@...

AiM Chat: Suhad1970

Re: Ruth- Muscle Biopsy GONE!

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

>

Please contact mito-owner with any problems or questions.

January 8, 2005