Carnitor

[Guest guest]

Hi, Christie,

>Were you found to have a carnitine deficiency or do you have a

Mitochrondrial disease?

>Carnitine is given in large doses for these diseases. I'm glad it reduced

>your fatigue - are you able to increase your activity or do exercise?

I was dx'ed with CFS 7 years ago. Got a dr who had experience treating it,

and carnitine & CoQ10 were the first two supplements he put me on. Moved me

up to Carnitor & higher doses when I didn't respond to lower doses of OTC

stuff.

He says that blood/serum levels of carnitine (the typical hospital/med lab

test) are often not indicative of cellular lack of carnitine. Fir that you

need a muscle biopsy, which is what was used in the research papers on

carnitine levels in CFS. So I have never had a carnitine level test, just

the observable effects from Carnitor treatment.

I have seen the same thing posted about other B vitamins. My own experience

with thiamine (next post) makes me believe it.

I have never been able to get up to exercising since I got this DD - only

able to increase activity levels. In the good times I could do home repair

work for an hour or two.

Jerry

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[Guest guest]

Are you going to have the biopsy? CHristie

At 12:56 AM 3/1/00 EST, you wrote:

>From: " Jerry " <jerrycam@...>

>

>Hi, Christie,

>>Were you found to have a carnitine deficiency or do you have a

>Mitochrondrial disease?

>>Carnitine is given in large doses for these diseases. I'm glad it reduced

>>your fatigue - are you able to increase your activity or do exercise?

>

>I was dx'ed with CFS 7 years ago. Got a dr who had experience treating it,

>and carnitine & CoQ10 were the first two supplements he put me on. Moved me

>up to Carnitor & higher doses when I didn't respond to lower doses of OTC

>stuff.

>He says that blood/serum levels of carnitine (the typical hospital/med lab

>test) are often not indicative of cellular lack of carnitine. Fir that you

>need a muscle biopsy, which is what was used in the research papers on

>carnitine levels in CFS. So I have never had a carnitine level test, just

>the observable effects from Carnitor treatment.

>I have seen the same thing posted about other B vitamins. My own experience

>with thiamine (next post) makes me believe it.

>

>I have never been able to get up to exercising since I got this DD - only

>able to increase activity levels. In the good times I could do home repair

>work for an hour or two.

>

>Jerry

>

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>This list is intended for patients to share personal experiences with each

other, not to give medical advice. If you are interested in any treatment

discussed here, please consult your doctor.

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>

[Guest guest]

Hi, ,

>I remember someone on this list said they were using this product. As far

>as I know it's by prescription only. To the person who said they were

>using it, can you please inform me of the dosage you are using and if its

>helping you? I would like to try to talk my doc into letting me use

>because I am having major Mito problems.

I am using 1g (3 330mg tablets) 3X/day, a total of 3g/day. It is helping me

with energy and exercise intolerance - without it I would probably be

virtually bedbound.

I just got a serum carnitine test - even tho taking 3g/day Carnitor, I was

in the low-to-mid normal range. I can only guess what it would be without.

I started on OTC carnitine back in 93, up to 1.5g/day. I did not improve on

that amount. That was probably due to OTC l-carnitine being contaminated

with d-carnitine. Only the l-carnitine is useful, but d-carnitine competes

for uptake in the gut, at the cell, and into mitochondria so even a little

contamination with d-carnitine is bad news.

How do you know you are having mito problems? Testing for this is difficult

and highly specialized; symptoms alone aren't enough for a mito dx. However,

medical treatment with Carnitor and Co-Q10 can be justified without a firm

dx, on the knowledge that mito can be an underlying problem and these are

effective treatments for it. If the treatment works you continue it; if not,

try something else. (This is a concept that our insurer is fighting against

tooth & nail. Unfortunately as of now they are winning.)

Jerry

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[Guest guest]

Hi

My son takes carnitore and has for 1 1/2 years but not for speech and it hasn't

helped his speech. He takes it to help increase his energy.

Lori

[Guest guest]

Carnitor is available by prescription for l-carnitine

supplementation. My daughter takes it to increase

muscle strength. I don't think there are a lot of

studies about it, and I have not heard that it helps

speech. The only thing I can think of is that if a

child is hypotonic, as mine is, he/she might get some

speech benefit by strengthening facial muscles.

Yael

--- seanzonigal <seanzonigal@...> wrote:

> I just recently heard of this carnitor to maybe help

> children's

> speech, has anyone heard of this, exatley what is

> it. Is is a drug or

> a supplement?

> Eileen

>

>

>

__________________________________________________

[Guest guest]

Hi,

I haven't posted for a long time, since I have something new and more

pressing to deal with now--seizures--but I still read the posts and came

across the thread about carnitine.

Someone mentioned that she gives her child a liquid form of Carnitor. My

daughter needs the Carnitor because her system is depleted by

anti-epileptic drugs and her prescription is for the tablet (BIG tablet)

form 3 times a day. I just started her on the ketogenic diet last month,

which means she doesn't get a large volume of food in which to " hide "

the Carnitor, drugs (until the can finally be safely weaned), calcium,

etc.

What is the liquid like? Does it taste good? And, very important because

of the diet, which is extremely low-carb--can you tell me what the other

ingredients are?

Thanks,

Barbara

[Guest guest]

Barbara,

I am the one who said about my child taking Carnitor. He takes liquid

because pill is too big and totally taste bad. There is no way I could make

him chew it.

Now, I can almost bet that liquid form has sugar in it, which won't be good

for your daughter. It is smell strong but on a sweet side. I would talk to

doc and make a decision from there. We started Carnitor for exact same

reason as you did, had a lot of seizuers. I tried hiding meds in Pediasure

but it would ended up not finished. I must admit, it took us some time to

get on schedule with Carnitor. The change in my child is sugnificant and I

really enjoy his climbing and strong pulls. I have only good things to say,

except that I wish I could just use natural remedies, never been and still

not meds eater.

Good Luck, Barbara and let me know if I can answer anymore questions, just

please don't ask me to taste Carnitor

[ ] Carnitor

> Hi,

> I haven't posted for a long time, since I have something new and more

> pressing to deal with now--seizures--but I still read the posts and came

> across the thread about carnitine.

>

> Someone mentioned that she gives her child a liquid form of Carnitor. My

> daughter needs the Carnitor because her system is depleted by

> anti-epileptic drugs and her prescription is for the tablet (BIG tablet)

> form 3 times a day. I just started her on the ketogenic diet last month,

> which means she doesn't get a large volume of food in which to " hide "

> the Carnitor, drugs (until the can finally be safely weaned), calcium,

> etc.

>

> What is the liquid like? Does it taste good? And, very important because

> of the diet, which is extremely low-carb--can you tell me what the other

> ingredients are?

> Thanks,

> Barbara

>

>

[Guest guest]

I also give my son carnitor, in the liquid form and he takes it straight out of

the medecine dropper. It doesn't taste bad, I tried it. He has hypotonia and

we've been trying that to see if we see any changes which I haven't really seen.

Take care

Nani

[ ] Carnitor

Hi,

I haven't posted for a long time, since I have something new and more

pressing to deal with now--seizures--but I still read the posts and came

across the thread about carnitine.

Someone mentioned that she gives her child a liquid form of Carnitor. My

daughter needs the Carnitor because her system is depleted by

anti-epileptic drugs and her prescription is for the tablet (BIG tablet)

form 3 times a day. I just started her on the ketogenic diet last month,

which means she doesn't get a large volume of food in which to " hide "

the Carnitor, drugs (until the can finally be safely weaned), calcium,

etc.

What is the liquid like? Does it taste good? And, very important because

of the diet, which is extremely low-carb--can you tell me what the other

ingredients are?

Thanks,

Barbara

[Guest guest]

Nani and others familiar with Carnitor,

You said your son takes Carnitor for hypotonia. Who recommended the

medication? Was it you or a doctor? And if a doctor presribed it,

were they a pediatrician, develop. pediatrician, neurologist? Also,

what test or labs were done if any prior to presribing the med?

My son also has hypotonia along with GERD, Dysphasia, SID,

Global/oral/verbal Dyspraxia. I have had him on ProEFA for 5mo now.

At first, just a few days of starting ProEFA, we noticed a surge in

speech attempts. We have not noticed any further improments ever

since. Was wondering if Reglan (increases gastric emptying, and other

symptoms of reflux) was inhibiting the absorption of the fish oils.

Now I'm wondering if he has a carnitine deficiency. My son is G-Tube

fed PediaSure for total nutritional support which can lead to a

carnitine deficiency.

I was wondering who would be best to discuss this with, his

pediatrician or the neurologist? To have a serum red cell carnitine

level drawn. Although, I have read that lab tests for secondary

carnitine deficiency may not be accurate.

Kris

--- In , " Nany00 . " <nany00@m...>

wrote:

> I also give my son carnitor, in the liquid form and he takes it

straight out of the medecine dropper. It doesn't taste bad, I tried

it. He has hypotonia and we've been trying that to see if we see

any changes which I haven't really seen.

> Take care

> Nani

> ----- Original Message -----

> From: B Eckert

>

> Sent: Friday, August 22, 2003 11:51 PM

[Guest guest]

" I At first, just a few days of starting ProEFA, we noticed a surge

in

> speech attempts. We have not noticed any further improments ever

> since. Was wondering if Reglan (increases gastric emptying, and

other

> symptoms of reflux) was inhibiting the absorption of the fish

oils. "

Reglan

Take prescribed medicines to strengthen the muscle at the bottom of

the esophagus (metaclopramide/ Reglan, Propulsid).

Take prescribed medicine to help the stomach empty faster

(Propulsid, Reglan).

http://www.constipated.com/publications/chapter21.html

Kris,

Reglan is harsher than fiber as a laxative. Harsh or not -what you

are seeing may have nothing to do with carnotine deficiency -but I

do suspect and agree with your first thought -that the inability for

the EFAs to work in a child who is just starting -or the regression

of one who already has had amazing surges in the EFAs - has to do

with has to do with digestion process on the body of Reglan and

similar medications or other laxatives.

I had only talked to a few families and professionals about this -

and was waiting to discuss with a researcher this week before

posting about it here -but since you brought it up...

When I give Tanner it appears 'any' type of over the counter aid for

his ongoing constipation -Benefiber included -his speech becomes

very dysfluent and he regresses some times to the point where he has

trouble saying simple words that I thought were all in his motor

memory already. It clears up -his speech goes back to amazing

again -within a week of when we stop the laxative.

As I've posted before -change in diet (adding more fiber/fruit and

veggies etc) does not help Tanner's constipation for some reason. I

mean the fish oil alone should technically help. The only thing

that helps the constipation without (I believe) interfering with the

absorption of the EFAs Tanner so desperately still needs -are enemas.

I didn't put the two (giving Tanner over the counter

laxatives /regression in speech) together at first -this was one my

husband noticed first.

We are waiting now to take Tanner to see a pediatric

gastroenterologist to find out what else if anything we can do -

keeping in mind the problem of laxatives on the absorption of EFAs.

Tanner's new pediatrician said that what has probably happened now

is that the bottom of his bowels are stretched out so he can hold

more while for some reason the signals are not being sent to his

brain when it's time to go. By the time he feels he has to " at this

point it becomes partly psychological because he knows that going to

the bathroom will be painful "

So if your child is on any type of digestion aid the two main

questions are -what is it doing to compromise the effectiveness of

the EFAs -and two -how can we help our child's constipation while

not hurting their speech ability that they have acquired from

essential fatty acids?

I don't know the answer -but this is a new (not talked about but not

uncommon in apraxia/autism/PDD/hypotonia) one who's answer may also

answer more questions for our children. I'll be seeing 's

mom Jennie today -and she is another on a laxitive medication who's

speech ability you can hear on the talking page here

http://www.debtsmart.com/talk/lindsey.html

=====

[Guest guest]

Kris, both his neurologist and genetics Dr agreed to try this for a while.

[ ] Re: Carnitor

Nani and others familiar with Carnitor,

You said your son takes Carnitor for hypotonia. Who recommended the

medication? Was it you or a doctor? And if a doctor presribed it,

were they a pediatrician, develop. pediatrician, neurologist? Also,

what test or labs were done if any prior to presribing the med?

My son also has hypotonia along with GERD, Dysphasia, SID,

Global/oral/verbal Dyspraxia. I have had him on ProEFA for 5mo now.

At first, just a few days of starting ProEFA, we noticed a surge in

speech attempts. We have not noticed any further improments ever

since. Was wondering if Reglan (increases gastric emptying, and other

symptoms of reflux) was inhibiting the absorption of the fish oils.

Now I'm wondering if he has a carnitine deficiency. My son is G-Tube

fed PediaSure for total nutritional support which can lead to a

carnitine deficiency.

I was wondering who would be best to discuss this with, his

pediatrician or the neurologist? To have a serum red cell carnitine

level drawn. Although, I have read that lab tests for secondary

carnitine deficiency may not be accurate.

Kris

[Guest guest]

Hi Jay:

Sorry it took so long to write back. MJ now has a sinus infection. Carnitor

is used for people who have a carnitine deficiency. People who are

chronically ill or disabled tend to have lower levels (can be checked by simple

blood

test). I know that with one of the drug tests done today, kids must take

Carnitine supplements with it. Carnitor is the prescription strength of the

supplement. Carnitine is an amino acid that is crucial for the oxidation of

fats to

generate energy. L-carnitine functions as a carrier for the transport of

fatty acids into the mitochondria, the " energy furnaces " of the cell.

When MJ is sick, we put her back on Carnitor and it does make a difference.

Hope that helps.

caregiver to MJ, SMA type I

http://www.our-sma-angels.com/Margaret/ MJ's website

http://www.caringbridge.com/ny/mjpurk MJ's journal

http://www.our-sma-angels.com/b4sma MJ's organization

http://www.caringbridge.org/ny/b4sma B4SMA information

Having courage does not mean that we are unafraid.

Having courage and showing courage means we face our fears.

We are able to say, " I have fallen, but I will get up. "

---Maya Angelou---

[Guest guest]

We had Maddy tested and her levels were nomal. I bought 2 bottles that are

unopened and unused as I was certain she would test low.

I will be willing to mail them to someone if you are interested for the cost

of postage.

Sharon

" claudia.morris " <claudia.morris@...> wrote:

>

> >

>

> >

>

> > Don't know where that info came from. I don't believe it is true.

>

> > Carnitine is what your body needs to process fatty acids normally

>

> in

>

> > the mitochondria. So with insufficient carnitine, all the omegas

in

>

> the

>

> > world won't get it processed properly. It makes total sense to

give

>

> > them together, with food to avoid tummy upset and maximize

>

> absorption. -

>

> >

>

> > > Hi Everyone-

>

> > >

>

> > > I saw a post in passing that Carnitor breaks down EFA's. Was

>

> there

>

> > any

>

> > > conclusion on this? My son also had the allergic shiners and

the

>

> > > dry/bumpy skin on his arms and legs prior to starting EFA's a

>

> couple

>

> > > years ago. Anyone with any experience on this? How far apart

>

> did

>

> > you

>

> > > give the Carnitor and the EFA's?

>

> > >

>

> > > Thanks!

>

> > > Katrina

>

> > >

>

> >

>

>

>

>

>

>

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