Re: LOIS-GERD/cyclic vomiting

[Guest guest]

GERD is just a fancy name for reflux. Cyclic vomiting is when a child

vomits in a form of a cycle. Some start vomiting and will continue to do so

until intervention is done such as meds and IV's and others will just vomit

every several days or even once a day (like my Asenath started like). We

had to begin giving Asenath Zofran daily to combat her vomiting and it has

worked wonders.

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.

> > > >

[Guest guest]

Our 7yo daughter has usually needed a shot to stop vomiting, but last

time we were away from home and the doctor gave us the sublingual

(under tongue) version of zofran. It worked great, and no worry about

whether she would keep it down. It is really expensive (like $26 a

pill if I remember correctly) but the advantage is it gets into the

system faster than anything except an injection.

Rod

> > >

> > >

> > >

> > > Hi everyone, me again,

> > >

> > > I have a weird question for you. When my kids get a fever, any

fever, I

> > > can smell rubbing alcohol on their breath, not their body. The

higher

> the

> > > fever the stronger the smell, and it is unmisstakably rubbing

alcohol.

> > > I have not used alcohol on them since they had umbiblical cords,

never

> > > given them alcohol baths, don't give them medicines with alcohol.

> > > I have never had this with me, but my sister also smells of rubbing

> > > alcohol

> > > on her breath when shes running a fever since she was a child,

and she

> > > says

> > > she can taste it too. This may be nothing, maybe something, any

ideas

> > > welcome.

> > > I told our pediatrician, hes investigating it, so I thought I

would ask

> > > the

> > > experts.

> > > Thanks,

> > > Lois

> > >

> > >

> > >

> > >

> > >

> > >

> > > > [Original Message]

> > > > From: Darla Klein <honeybear50317@m...>

> > > > To: <Mito >

> > > > Date: 3/6/2005 12:25:37 AM

> > > > Subject: Re: Leighann's crashing

> > > >

> > > >

> > > > I am sorry to hear she isn't doing well. What are you

seeing? I

> > > > understand the helpless feeling. It can be so frustrating to

not be

> > > > able

> > > to

> > > > do anything to stop the crash (other than allowing them to rest

> plenty,

> > > > provide lots of fluids, supplements, and etc.). Hopefully it

will be

> a

> > > > short one and she will be feeling better soon.

> > > >

> > > > 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.

> > > > > >