RE: Re: rubbing alcohol smell

[Guest guest]

Rod,

Thats what I'm thinking. They've always had that smell with the

fevers, but I always kind of thought it was nothing. Then by the

time we got to the doctors office I always forgot about it.

Like I said my sister always does the same way, so I thought it

was normal. Plus it's both girls, and my oldest daughter has had

no problems, no alarms at all, and my sister is almost healthy,

nothing major. We go back to the geneticist Monday, but I

called and left a message for the nurse today to make sure I don't

forget Monday. My oldest daughter still has a mild fever so I

hope they can try to seize the moment. Leighann has had minimal

fever this whole time, I think her sister had a sympathy fever for

her, that's all she got out of it, high fever, and Leighann had low fever

but really sick in every other way. At least they share, right.

Thanks for the advice, hopefully we can figure this out. Now I know

it's not normal and may be a sign of trouble.

Thanks,

Lois

> [Original Message]

>

> To: <Mito >

> Date: 3/7/2005 3:59:32 PM

> Subject: Re: rubbing alcohol smell

>

>

>

> I would think that there is something going on that you at least want

> to be aware of. Has your metabolic doctor ever suggested any testing

> on the kids while they had a fever? You could then take them

> someplace local to get the testing done. We have had lab orders

> given to us in the past to use when the kids were symptomatic.

>

> There are a lot of things that could be out of whack causing the

> smell. Ketoacidosis has a sweet fruity smell, but that is serious

> enough that you would have known long ago if that were the problem

> (associated with type 1 diabetes).

>

> 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.

> > > > >

[Guest guest]

,

From all the responses to this post, apparently we're

not crazy. Definately worth checking out. I'm asking

her ped to do some research on ketosis, see what

comes out. I wonder if this is mito or just coincidence,

some of us have experienced this, I guess others have not.

I'm definately going to tell our geneticist about the

responses I got. Very interesting.

> [Original Message]

>

> To: <Mito >

> Date: 3/8/2005 2:31:53 PM

> Subject: Re: rubbing alcohol smell

>

>

>

> I couldn't believe it when I saw this posting- I always thought I

> was crazy for thinking my daughter's breath smelled when she was

> getting sick. I could never pin point the smell- but it made me

> sick. I asked the pediatrician to smell her breath once, she

> basically laughed. It is so nice to have this chat so even the

> weirdest of things can be explored.

>

>

> - Cincinnati

>

>

>

> >

> >

> > 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.

> > > > >

[Guest guest]

,

Hopefully she won't go into ketosis with the diet, but if she does maybe

a doctor there will know more info that might help.

Thanks and good luck with the diet,

Lois

> [Original Message]

>

> To: <Mito >

> Date: 3/10/2005 11:20:29 AM

> Subject: Re: rubbing alcohol smell

>

>

>

> Lois,

>

> My daughter, Madison starts the Ketogenic diet next week at Cinti.

> Children's. I'll definitely be keeping an eye out for the smell as

> she goes into ketosis and will keep you updated. VERY interesting.

>

>

>

>

> > > >

> > > >

> > > > 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.

> > > > > > >