Re: Carnitor and coenzymeQ10

[Guest guest]

In a message dated 02/24/2000 10:49:47 PM Pacific Standard Time,

reeder@... writes:

> saw a peds nuero at the

> MDA clinic and he uped her dose of coQ10

> to 120 miligrams a day.(2 60mg capsules).

> Does that seem right? Ashely is only 23

> pounds. Another thing he put her on is

> Carnitor. I am really unfamiliar with this

> . If anyone has any information on this

> and if there are any side effects, I would

> appreciate it.

> Thanks

That dose seems about right to me . . . I think we were told to start as low

as 4mg/kg/day, and move up to 10 mg/kg/day, and then if we did not see

results, we could as much as double that. So it sounds like that dose is in

the range!

takes Carnitor. I am not aware of any side effects, though I think I

saw in a post recently that it possibly caused constipation. However, like

, most of the others I know who take the medication have seen improvement

in their motility rather than this side effect. There is an article by the

MDA on Carnitor and CoQ10. I think there is a link to it at the UMDF site .

.. .

<A HREF= " http://www.umdf.org/Index.htm#NoFramesNavigation " >The United

Mitochondrial Disease Foundation</A>

Here is a link to a site by the company that produces Carnitor.

http://www.sigmatau.com/prescription_s.html

Good luck!

Kathy Corley

mom to and

[Guest guest]

Pam,

My son weighs 60 pounds and takes 360 mgs of Q10, so that sounds about

right.

Terri

>

>Reply-To: Mitoonelist

>To: Mitoonelist

>Subject: Carnitor and coenzymeQ10

>Date: Fri, 25 Feb 2000 06:43:38 -0000

>

>Hi all. saw a peds nuero at the

>MDA clinic and he uped her dose of coQ10

>to 120 miligrams a day.(2 60mg capsules).

>Does that seem right? Ashely is only 23

>pounds. Another thing he put her on is

>Carnitor. I am really unfamiliar with this

>. If anyone has any information on this

>and if there are any side effects, I would

> appreciate it.

>Thanks

>Pam

>

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[Guest guest]

the dose sounds good to me too...lexi is 23 pounds and takes 100 mgs a day

ruth

[Guest guest]

Hi Pam;

is on carnitor and is 70pounds with still undiagnosed but

definite mito problem. She is very sensitive to changes in the dose. We

had her 1.6ml twice daily for a very long time and then due to fatty

build up around the trunk, Dr. Stein doubled it to 3.0ml twice/day... We

cycled into nine days of grand mal seizures... (some days two)... We

lowered the dose back down to 2.0ml twice a day and she has stabilized

and not seized since Friday (that's one week today, seizure free). I

don't know if this is typical, but it might help to know that some of

our kids are helped by,,, but still very sensitive to dosage changes of

their supplements. Hope this helps.

Sharon

's mom

[Guest guest]

Speaking of carnitine, Dr. Gropman has my son on 750 mg a day. Does that sound

high? He doesn't seem to

have any adverse reactions to it, but another neurologist told me that 100mg is

all you take. is

almost 3 and weighs about 33 pounds or so. He also takes 100 mg of B1 + B2,

500mg of Vit E, 250 mg of

Vit. C and 75 mg of COQ10 daily.

Terri Mason wrote:

>

>

> Pam,

>

> My son weighs 60 pounds and takes 360 mgs of Q10, so that sounds about

> right.

>

> Terri

>

> >

> >Reply-To: Mitoonelist

> >To: Mitoonelist

> >Subject: Carnitor and coenzymeQ10

> >Date: Fri, 25 Feb 2000 06:43:38 -0000

> >

> >Hi all. saw a peds nuero at the

> >MDA clinic and he uped her dose of coQ10

> >to 120 miligrams a day.(2 60mg capsules).

> >Does that seem right? Ashely is only 23

> >pounds. Another thing he put her on is

> >Carnitor. I am really unfamiliar with this

> >. If anyone has any information on this

> >and if there are any side effects, I would

> > appreciate it.

> >Thanks

> >Pam

> >

>

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by mitochondrial disease.

[Guest guest]

,

My daughter Rose's Dr has her on 360mg of Carnitor 3x daily, and to me

that sounds like a lot, she is also on B2 100 mg daily, plus a multi vit +

minerals. I always feel like I am giving alot of vitamins and supplements,

but every time they check any carnitine levels, she is either below normal

or low normal, and bot can we tell when she is starting to out grow the

dose, and in need of a med increase. Oh, Rose will be 3 May 1, she is

24 lbs.

At this time she is not on Co Q 10, but it has been discussed.

I think it all depends on what our children's needs are, and how deficient

they are. But I could be wrong.;o)

I do know that since she was started on the Carnitor, we have seen such a

dramatic improvement in her heart condition, that her cardiologist, who

thought we would be headed in for our 4th heart surg by now, is scratching

his head and wishing she had been started on this at birth! So far we have

had no adverse reaction, only positive ones.

Carnitor and coenzymeQ10

> > >Date: Fri, 25 Feb 2000 06:43:38 -0000

> > >

> > >Hi all. saw a peds nuero at the

> > >MDA clinic and he uped her dose of coQ10

> > >to 120 miligrams a day.(2 60mg capsules).

> > >Does that seem right? Ashely is only 23

> > >pounds. Another thing he put her on is

> > >Carnitor. I am really unfamiliar with this

> > >. If anyone has any information on this

> > >and if there are any side effects, I would

> > > appreciate it.

> > >Thanks

> > >Pam

> > >

> >

> > ______________________________________________________

> > Get Your Private, Free Email at http://www.hotmail.com

> >

> > ------------------------------------------------------------------------

> > Get what you deserve with NextCard Visa! ZERO! Rates as low as 0.0%

> > Intro or 9.9% Fixed APR, online balance transfers, Rewards Points,

> > no hidden fees, and much more! Get NextCard today and get the credit

> > you deserve! Apply now! Get your NextCard Visa at:

> > http://click./1/914/1/_/368657/_/951505119/

> > ------------------------------------------------------------------------

> >

> > Brought to you by www.imdn.org - an on-line support group for those

affected by mitochondrial disease.

>

>

> ------------------------------------------------------------------------

> Start your own free email group on eGroups.

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affected by mitochondrial disease.

>

[Guest guest]

Hi .

It's funny, but the doc has my son on the carnitine (750mg) even though he does

not have a deficiency. My

concern is the fluctuation among doctors on what doses they feel are necessary.

My son's other

neurologist says 100mg a day and biotin. The new doctor says no biotin. Of

course my son does not have

any confirmed mito disorder, but we are just trying this empirically. At any

rate, I feel that it is

really dangerous that there is no consensus among doctors about what the

standard dose for some of these

vitamins is. Maybe they will come up with something at the NIH symposium.

wrote:

>

>

> ,

> My daughter Rose's Dr has her on 360mg of Carnitor 3x daily, and to me

> that sounds like a lot, she is also on B2 100 mg daily, plus a multi vit +

> minerals. I always feel like I am giving alot of vitamins and supplements,

> but every time they check any carnitine levels, she is either below normal

> or low normal, and bot can we tell when she is starting to out grow the

> dose, and in need of a med increase. Oh, Rose will be 3 May 1, she is

> 24 lbs.

> At this time she is not on Co Q 10, but it has been discussed.

> I think it all depends on what our children's needs are, and how deficient

> they are. But I could be wrong.;o)

> I do know that since she was started on the Carnitor, we have seen such a

> dramatic improvement in her heart condition, that her cardiologist, who

> thought we would be headed in for our 4th heart surg by now, is scratching

> his head and wishing she had been started on this at birth! So far we have

> had no adverse reaction, only positive ones.

>

>

> Carnitor and coenzymeQ10

> > > >Date: Fri, 25 Feb 2000 06:43:38 -0000

> > > >

> > > >Hi all. saw a peds nuero at the

> > > >MDA clinic and he uped her dose of coQ10

> > > >to 120 miligrams a day.(2 60mg capsules).

> > > >Does that seem right? Ashely is only 23

> > > >pounds. Another thing he put her on is

> > > >Carnitor. I am really unfamiliar with this

> > > >. If anyone has any information on this

> > > >and if there are any side effects, I would

> > > > appreciate it.

> > > >Thanks

> > > >Pam

> > > >

> > >

> > > ______________________________________________________

> > > Get Your Private, Free Email at http://www.hotmail.com

> > >

> > > ------------------------------------------------------------------------

> > > Get what you deserve with NextCard Visa! ZERO! Rates as low as 0.0%

> > > Intro or 9.9% Fixed APR, online balance transfers, Rewards Points,

> > > no hidden fees, and much more! Get NextCard today and get the credit

> > > you deserve! Apply now! Get your NextCard Visa at:

> > > http://click./1/914/1/_/368657/_/951505119/

> > > ------------------------------------------------------------------------

> > >

> > > Brought to you by www.imdn.org - an on-line support group for those

> affected by mitochondrial disease.

> >

> >

> > ------------------------------------------------------------------------

> > Start your own free email group on eGroups.

> > http://click./1/1882/1/_/368657/_/951527543/

> > ------------------------------------------------------------------------

> >

> > Brought to you by www.imdn.org - an on-line support group for those

> affected by mitochondrial disease.

> >

>

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by mitochondrial disease.

[Guest guest]

Has anyone seen a dramatic improvement with better muscle tone once their

child started CoQ 10?

thanks

[Guest guest]

Carnitor doses and Co Enzyme Q doses can very quite a lot. It is a very

individual thing. Remember that this is not one disease but a group of

many diseases that are considered to be similar, under the same

umbrella, so to speak. Then on top of that you have to also consider

the fact that two people with the same complex defect, can have

different sub cellular defects that may cause them to respond

differently to the same med.

In other words, you can have two 3 year old boys that have a confirmed

defect at complex III, and one may respond well to one dose and the

other may require a lot more.

The typical starting dose of Co Enzyme Q, when Caitlin was diagnosed by

Dr. Shoffner, in the early 90's, was 4.3 mg per kilo of body weight.

For a 35 pound child, just divide 35 pounds by 2.2 to convert their

weight to kilograms. ( approx. 16 kilos) Then to figure the minimum

dose required, you multiply their weight in kilos, for example 16 kg, by

4.3 mg and that is the minimum starting dose of Co Q. ( Approximately

70 mg per day) Then you have decide if you will give it in one dose, or

two or three divided doses. That can also impact the effectiveness. If

you are using the 10 mg per kilo dose, then you multiply the weight in

kilos by 10 and that is the total amount of Co Q per day (or 160 mg per

day).

On another note, some people are very sensitive to Co Q and while they

may not be able to tolerate it at a starting dose that high, they may be

able to work up to it gradually and do well. Also, it also matters

where the particular defect is, as far as how responsive you are to the

Co Q. Supposedly the lower in the chain, i.e. Complex I, the more

responsive one usually is to the supplements in general. The farther up

the chain, i.e. Complex IV, the less effective the supplements appear to

be, " in general " . Supposedly, Complex IV and V are the least responsive

to supplements in general. This makes sense if you consider that a

defect at the end of the chain may tend to get bottlenecked and clogged

on it's own, without overloading it with extra supplements from earlier

in the cycle. That is not to say that the supplements may not be

helpful, but they can also cause some problems in certain people.

It has been our experience, that it is always more effective to start

supplements and some meds at a very low dose and gradually increasing

the dose. We see far less side effects and we tend to see a greater

tolerance of the meds this way. It is also important to only adjust or

add one new med, or supplement at a time. We keep a log, noting each

new med, or supplement and any subsequent changes in dose or timing,

along with any new symptoms or changes in status. This has helped us to

sort out many periods of deterioration that were apparently caused by

" something " that we changed or added.

As far as carnitor goes, the dosages also vary there as well. For

children that were carnitine deficient, in the early 90's, the

recommended dose was 1000 mg per day, in three divided doses. The

recommended dose at that time for adults that were deficient was 3000 mg

per day, in three divided doses. However, there are also doctors that

use a per kilo dose, of 50 - 100 mg per kilo of weight per day, and

increase the dose as the child grows. Many docs are using Carnitor for

other reasons aside from carnitine deficiency, and the doses there vary

as well.

Both drugs are quite helpful for many people with mito/metabolic

disease, but both have the potential to cause problems for those that

exceed their particular needs. It can be a very tricky situation to

find just the right amount. Too much many be as detrimental as not

enough. And each situation is individual. There is not always a set

dose for either.

Hope this helps,

Jeannine

[Guest guest]

My son started with Coenzyme Q-10 and also the mixture of vitamin K3 and C

together and since he started that around Halloween he started crawling really

well in the late part of November. Took a couple of miraculous steps in

December. Started taking more steps in January. Started walking really well in

February and this week has attempted a little run sort of thing and moving his

feet like he is dancing.

I don't know if it is the coQ-10 or the K-3 and C (already takes Carnitor) or

what but he did improve greatly after starting those and seems to get " better "

all of the time.

Thanks for listening. I don't know if this helps.

Becky

At 11:22 AM 2/26/2000 EST, you wrote:

>From: Dillr@...

>

>Has anyone seen a dramatic improvement with better muscle tone once their

>child started CoQ 10?

>

>thanks

>

>

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>