Re: starting Carnitor and how long it takes for change?

[Guest guest]

Dena,

Our started carnitor and it was great! Not the taste mind you but the reaction it had. was able to do things she had not been able to do in years...ride her bike ect. She is 12 and about 175 pounds and takes 1 tsp 2 x daily. It took about three weeks I guess to really see deffinate changes.

Best of luck to you and yours!

Horsley

[Guest guest]

Dena,

Our started carnitor and it was great! Not the taste mind you but the reaction it had. was able to do things she had not been able to do in years...ride her bike ect. She is 12 and about 175 pounds and takes 1 tsp 2 x daily. It took about three weeks I guess to really see deffinate changes.

Best of luck to you and yours!

Horsley

[Guest guest]

In a message dated 5/1/02 10:03:46 AM Pacific Daylight Time,

twillis@... writes:

<< within 2 months Owen was able to start to speed/walk/run. All this from a

child who before the carnitor could not turn a corner without falling down.

Good luck!! It has made the biggest difference of all the meds/therapies we

have tried for my son. >>

Thanks for the encouraging hope! :-)

Dena

[Guest guest]

In a message dated 5/1/02 10:03:46 AM Pacific Daylight Time,

twillis@... writes:

<< within 2 months Owen was able to start to speed/walk/run. All this from a

child who before the carnitor could not turn a corner without falling down.

Good luck!! It has made the biggest difference of all the meds/therapies we

have tried for my son. >>

Thanks for the encouraging hope! :-)

Dena

[Guest guest]

We were also advised to start out with a low dose the first week. 1ml then the second week go to 2ml and then on the third go to 4 ml.

He is only 3 so I am sure your boys dose will be higher but that is how we were instructed to do so for the purposes you were concerned about.

We have seen a big improvement in his bowels. Working great.

He has only been on it since Feb. so as far as his muscles go, we will have to wait on that. His blood sugars have become much more stable. He has problems with highs and lows. Not much of either on going on.

He is still having terrible leg pains so I don't think his leg pains are from Carnitine deficiency. Must be something else there.

Hope this helps,

Krystena

starting Carnitor and how long it takes for change?

Hi all,The Genetics doc agreed yesterday to Carnitor for the boys (yeah!!) in the hopes that it will help with 's muscle function/myopathy and 's muscle "cramping", fatigue. I'm also on the OAA list (organic acidemia association) and the nice folks there suggested starting it slowly to prevent GI problems/diarrhea. But, most of those kiddos have been on it since infancy, so I have another question to ask here. How long did it take for your kiddos to start seeing improvement (in energy level, muscles, mood, etc.) after starting the Carnitor?Thanks! DenaPlease contact mito-owner with any problems or questions.

[Guest guest]

We were also advised to start out with a low dose the first week. 1ml then the second week go to 2ml and then on the third go to 4 ml.

He is only 3 so I am sure your boys dose will be higher but that is how we were instructed to do so for the purposes you were concerned about.

We have seen a big improvement in his bowels. Working great.

He has only been on it since Feb. so as far as his muscles go, we will have to wait on that. His blood sugars have become much more stable. He has problems with highs and lows. Not much of either on going on.

He is still having terrible leg pains so I don't think his leg pains are from Carnitine deficiency. Must be something else there.

Hope this helps,

Krystena

starting Carnitor and how long it takes for change?

Hi all,The Genetics doc agreed yesterday to Carnitor for the boys (yeah!!) in the hopes that it will help with 's muscle function/myopathy and 's muscle "cramping", fatigue. I'm also on the OAA list (organic acidemia association) and the nice folks there suggested starting it slowly to prevent GI problems/diarrhea. But, most of those kiddos have been on it since infancy, so I have another question to ask here. How long did it take for your kiddos to start seeing improvement (in energy level, muscles, mood, etc.) after starting the Carnitor?Thanks! DenaPlease contact mito-owner with any problems or questions.

[Guest guest]

Hi Dena

My son Owen started last spring. In one month's time we noticed a difference in his muscles. Our neurologist doubled his dose as a result to one teaspoon 2x per day and within 2 months Owen was able to start to speed/walk/run. All this from a child who before the carnitor could not turn a corner without falling down. Good luck!! It has made the biggest difference of all the meds/therapies we have tried for my son.

Sincerely,

Bridget Mom To Owen, 3 yrs, highly suspected Mito, mid-line hypotonia, seizures, global developmental delay, autism, and the world's biggest belly laughand , 1 yr, developing well (thank God, everyday)

starting Carnitor and how long it takes for change?

Hi all,The Genetics doc agreed yesterday to Carnitor for the boys (yeah!!) in the hopes that it will help with 's muscle function/myopathy and 's muscle "cramping", fatigue. I'm also on the OAA list (organic acidemia association) and the nice folks there suggested starting it slowly to prevent GI problems/diarrhea. But, most of those kiddos have been on it since infancy, so I have another question to ask here. How long did it take for your kiddos to start seeing improvement (in energy level, muscles, mood, etc.) after starting the Carnitor?Thanks! DenaPlease contact mito-owner with any problems or questions.

[Guest guest]

Hi Dena

My son Owen started last spring. In one month's time we noticed a difference in his muscles. Our neurologist doubled his dose as a result to one teaspoon 2x per day and within 2 months Owen was able to start to speed/walk/run. All this from a child who before the carnitor could not turn a corner without falling down. Good luck!! It has made the biggest difference of all the meds/therapies we have tried for my son.

Sincerely,

Bridget Mom To Owen, 3 yrs, highly suspected Mito, mid-line hypotonia, seizures, global developmental delay, autism, and the world's biggest belly laughand , 1 yr, developing well (thank God, everyday)

starting Carnitor and how long it takes for change?

Hi all,The Genetics doc agreed yesterday to Carnitor for the boys (yeah!!) in the hopes that it will help with 's muscle function/myopathy and 's muscle "cramping", fatigue. I'm also on the OAA list (organic acidemia association) and the nice folks there suggested starting it slowly to prevent GI problems/diarrhea. But, most of those kiddos have been on it since infancy, so I have another question to ask here. How long did it take for your kiddos to start seeing improvement (in energy level, muscles, mood, etc.) after starting the Carnitor?Thanks! DenaPlease contact mito-owner with any problems or questions.

[Guest guest]

My girl has been on it for her Leighs for almost 4 years now and it help

right away with her.

But now it does not seem to be helping as much

If you have any other ? and if i could help with anything else let me know

Chrissy

>From: waislandgirl@...

>Reply-To: Mito

>To: mito

>Subject: starting Carnitor and how long it takes for change?

>Date: Wed, 1 May 2002 10:57:30 EDT

>

>Hi all,

>The Genetics doc agreed yesterday to Carnitor for the boys (yeah!!) in the

>hopes that it will help with 's muscle function/myopathy and

>'s

>muscle " cramping " , fatigue. I'm also on the OAA list (organic acidemia

>association) and the nice folks there suggested starting it slowly to

>prevent

>GI problems/diarrhea. But, most of those kiddos have been on it since

>infancy, so I have another question to ask here. How long did it take for

>your kiddos to start seeing improvement (in energy level, muscles, mood,

>etc.) after starting the Carnitor?

>

>Thanks! Dena

CHRISTINE KNOUSE-SCHUSTER

_________________________________________________________________

MSN Photos is the easiest way to share and print your photos:

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[Guest guest]

My girl has been on it for her Leighs for almost 4 years now and it help

right away with her.

But now it does not seem to be helping as much

If you have any other ? and if i could help with anything else let me know

Chrissy

>From: waislandgirl@...

>Reply-To: Mito

>To: mito

>Subject: starting Carnitor and how long it takes for change?

>Date: Wed, 1 May 2002 10:57:30 EDT

>

>Hi all,

>The Genetics doc agreed yesterday to Carnitor for the boys (yeah!!) in the

>hopes that it will help with 's muscle function/myopathy and

>'s

>muscle " cramping " , fatigue. I'm also on the OAA list (organic acidemia

>association) and the nice folks there suggested starting it slowly to

>prevent

>GI problems/diarrhea. But, most of those kiddos have been on it since

>infancy, so I have another question to ask here. How long did it take for

>your kiddos to start seeing improvement (in energy level, muscles, mood,

>etc.) after starting the Carnitor?

>

>Thanks! Dena

CHRISTINE KNOUSE-SCHUSTER

_________________________________________________________________

MSN Photos is the easiest way to share and print your photos:

http://photos.msn.com/support/worldwide.aspx

[Guest guest]

, my son takes L-Carnitine, not Carnitor. We get it compounded in capsules so that the fillers are taken out that may bother him - he does not react well to dyes, lactose, etc. I am curious what the dosage is in your 1 tsp. so I can see how much my son is on in comparison. (Thanks!) We just doubled his dose as he was having more seizure-type activitiy and headaches again, which disappeared with the carnitine.

Dena, this too has helped my son the most of anything. He has a mito mutation, hypotonia, and autism, just to be brief.

cara

Re: starting Carnitor and how long it takes for change?

Dena,

Our started carnitor and it was great! Not the taste mind you but the reaction it had. was able to do things she had not been able to do in years...ride her bike ect. She is 12 and about 175 pounds and takes 1 tsp 2 x daily. It took about three weeks I guess to really see deffinate changes.

Best of luck to you and yours!

HorsleyPlease contact mito-owner with any problems or questions.

[Guest guest]

I was told that it can take at least a month to see results. My kids seem to

have improved energy and less fatigue but as far as muscle cramps/spasms go,

Carnitor doesn't seem to make a lot of difference for them. I was also told

that if they take B2 with this, they won't smell fishy. I don't know if this

is true but the B2 also seems to have helped improve their stamina. However,

CoQ10 taken 2 times a day has made a big improvement with muscle spasms and

pain. Of course everyone is different! But I do suggest starting only one

thing at a time so you can see if it works and also so if there are side

effects, you know what caused them.

Hope this helps.

Kathi