Re: - rubbing alcohol smell

[Guest guest]

My girls have battled this smell, especially in their urine frequently.

Every time they get ill I expect to smell it and usually do. BUT when I

speak to her docs about it, none of them, even Dr. Whiteman, get concerned

and test for anything. How bad is it to have this issue and what can it

lead to?

See www.caringbridge.org/ia/mitomomof9 and www.heartbeatsformito.org to see

a photo look into what Mito looks like

Darla: mommy to

Asenath (4) Mito, CNS Vasculitis, strokes, migraines, seizures, G-tube,

hypotonicity, disautonomy, SID, global delays, asthma, cyclic vomiting,

bladder issues, wheelchair for distances, eye issues, autistic behaviors,

gastric emptying issues...

Zipporrah (14 months) Mito, strokes, neuro-motor planning dys., SID, GERD,

dysphasia, 100% G-tube fed, speech delays, extreme fatigue, excessive

phlegm, asthma, trach issues, aberrant subclavian artery, disautonomy,

hypertonicity, migraines, possible seizures, dumping syndrome, iron

deficiency, ...

Luke (16), Leah (14), Rachael (13), Isaac (10), Tirzah (8), Kezia (4), &

Marquis (3), Joey & (12 months) (some with Mito symptoms)

Re: fresh muscle biopsies

> > > > >

> > > > >

> > > > >

> > > > > We waited more than a year to get into Cleveland clininc to see

> > Cohen.

> > > > > We

> > > > > then were sent to Parikh, a fellow. It was not pretty. He said he

> > would

> > > > do the

> > > > > biopsy and then didn't. He said things like is in the 50th

> > > > percentile for

> > > > > height for a five year old. She was 6 1/2. He said he did testing

> > > > > he

> > did

> > > > not do.

> > > > > He sent paperwork to docs we had not seen in years---against my

> > express

> > > > > wishes. He never opened the films of MRIs and CTs even though he

> > asked

> > > > > for them.

> > > > >

> > > > > Atlanta is close to you. Schoffner is at Children's Health Care of

> > > > Atlanta. They

> > > > > don't take medicaid. They also require written preapproval by

> > insurance

> > > > and

> > > > > copays paid in advance. It would probably be quicker to get a

> > > > > biopsy

> > in

> > > > > Atlanta. It takes about four months to get the report back.

> > > > >

> > > > > If you try Cleveland Clinic, you might be better off finding a

> > great

> > > > > mito

> > > > doc who

> > > > > will ask Cohen to order specific testing done (ex. Whiteman

> > > > > at

> > > > Mayo).

> > > > >

> > > > >

> > > > >

> > > > >

> > > > >

> > > > >

> > > > >

> > > > >

> > > > >

> > > > >

> > > > > Please contact mito-owner with any problems or

> > > > > questions.

> > > > >