Re: CARRIE/CARNITOR/Constipation Help

[Guest guest]

I am sorry, but do not know how accurate it is. I do know, however, they can not get an accurate first read if he had taken any form of it for two weeks prior the test. I don't see how the one from epic can hurt, the only thing is with RX Carnitor insurance will pay for it. Dr. Cohen prescribed Carnitor for Grace the same day her blood was drawn to test for the deficiancy. He had stated that it cannot hurt you, only help. He also stated that with Mito practically everybody takes it. (She had been taking Carnitor for at least 6 months before she was ever diagnosed.) It has helped Grace in so many ways that we believe the Carnitor to be the most important drug in her cocktail. I hope your son has good results from it, also.

,Mommy to (9), (7), Bre-Anne (6), Grace (2) and our newest arrival is due Sept. 20thFor the latest baby info, and to see our family check out:www.BabyCountDown.com?baby=4007

[Guest guest]

Hi ,

Thanks for the response. My son's blood did not show a Carnitine

deficiency, so I guess it would be OK to get the one from Epic4Health.

Do you know how accurate the blood test for L-Carnitine is? If I

remember correctly it was normal.

Shirley

> I have heard that many children do benefit from Carnitor with

> constipation.  For my daughter it helped her more that anyone ever

> imagined.  She was opposite, though, and had severe chronic diarrhea. 

> The carnitor helped her break her food down better, therefore making

> her BM's more normal.  I would consult with your doctor about this. 

> Carnitor is a prescription, and really needs to be followed by a

> doctor who can make sure he is getting the right dose.  Our mito doc

> checks blood levels, (Grace is actually carnitine deficient) to make

> sure she is getting the proper dose.  Also if your son is actually

> carnitine deficient, the over the counter forms are not recommended. 

>  

>  

> ,

> Mommy to (9), (7), Bre-Anne (6), Grace (2) and our

> newest arrival is due Sept. 20th

>

> For the latest baby info, and to see our family check out:

> www.BabyCountDown.com?baby=4007

>

>

> Please contact mito-owner with any problems or

> questions.

>

>

>

>

>

[Guest guest]

My daughter did not have carnitine deficiency. She has been taking

Carnitor since 1995. The prescription Carnitor has helped her motor

regression tremendously and helped with the constipation at first. As

the disease has progressed we did have to add Miralax for constipation.

I hope your son has good results from its addition.

Take care, Shelby, mother of , 30 years, mitochondrial

encephalopathy, clinically diagnosed in 1998 by Dr. Kelley, Kennedy

Krieger

> I am sorry, but do not know how accurate it is.  I do know, however,

> they can not get an accurate first read if he had taken any form of it

> for two weeks prior the test.  I don't see how the one from epic can

> hurt, the only thing is with RX Carnitor insurance will pay for it. 

> Dr. Cohen prescribed Carnitor for Grace the same day her blood was

> drawn to test for the deficiancy.  He had stated that it cannot hurt

> you, only help.  He also stated that with Mito practically everybody

> takes it. (She had been taking Carnitor for at least 6 months before

> she was ever diagnosed.) It has helped Grace in so many ways that we

> believe the Carnitor to be the most important drug in her cocktail. I

> hope your son has good results from it, also.

>  

> ,

> Mommy to (9), (7), Bre-Anne (6), Grace (2) and our

> newest arrival is due Sept. 20th

>

> For the latest baby info, and to see our family check out:

> www.BabyCountDown.com?baby=4007

>

>

> Please contact mito-owner with any problems or

> questions.

>

>

>

>

>