Re: Re: LOIS-GERD/cyclic vomiting

[Guest guest]

now GERD makes sense, shes got reflux, how does she take the zofran?

Leighann got that at the hospital and phenergran at home, but the

phenergran knocked her out for like 14 hours.

The zofran didnt but our doc said he didnt trust the dissolving tablets. At

least we got fluids in her with the zofran.

Thanks for the explanations.

Lois

> [Original Message]

>

> To: <Mito >

> Date: 3/7/2005 9:52:52 PM

> Subject: Re: LOIS-GERD/cyclic vomiting

>

>

> 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]

Asenath takes all her meds by G-tube but used to take meds orally " way back

when. " We get a liquid form of Zofran and she has drank it a few times, but

prefers not 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.

> > > > > >

[Guest guest]

Thanks, definately something to remember. Our doctors not

aware of the liquid form. Thanks!

> [Original Message]

>

> To: <Mito >

> Date: 3/8/2005 11:08:05 AM

> Subject: Re: Re: LOIS-GERD/cyclic vomiting

>

>

> Asenath takes all her meds by G-tube but used to take meds orally " way

back

> when. " We get a liquid form of Zofran and she has drank it a few times,

but

> prefers not 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.

> > > > > > >

[Guest guest]

That's definately worth the price if it works that well,

thanks for the info, maybe because of Leighann only

being 2, I don't know, something to look into,

definately better than another shot.

Thanks,

Lois

> [Original Message]

>

> To: <Mito >

> Date: 3/8/2005 8:12:44 PM

> Subject: Re: LOIS-GERD/cyclic vomiting

>

>

>

> 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.

> > > > > > >