carnitine and low muscle tone - Alyssa

[Guest guest]

>

> Prescription carnitine has been a " rescue medication " for my son

with low muscle tone. He had labs and his carnitine was actually

reduced and taking the carnitine has raised his level to within normal

limits. My son could not bear weight on his legs until he began

carnitine and B12 supplements.. Within 30 days of starting carnitine

and 6 days starting B12/Bcomplex vitamins he took weight on his legs

for the first time ever. And after being on the carnitine and B

vitamins for 6 months (with PT) he began to walk!!!!!

>

> You might consider having his free and total carnitine levels

checked via lab work to make sure his carnitine level isn't reduced.

And you can give an l-carnitine supplement but if you do, it may skew

the childs labs. So decide if you want the lab work done first,

before starting a supplement.

Hi Alyssa,

Do you know how long it takes for carnitine levels to return to normal

for someone who has been taking carnitine supplements?

I'd like to have my son tested since I'm sure he lacks it but I read

somewhere that it can take a few weeks for levels set through

supplementation to come down. Do you know anything about this? I'm not

keen to deprive him of it for longer than necessary but I would like

to benefit from the prescription.

Thanks,

[Guest guest]

I can appreciate your dilemma and unfortunately I don't know.  Just check with

the ordering physician who will make the lab request.  I would think it might

take more than a week to clear the supplement out of the system.  I was recently

told that a folinic acid supplement took 5 days to leave the body by our

doctor.  I would probably even wait a little longer than the doctors tell you

to, just to make sure it's an accurate lab.

 

If you suspect his level is low, my advice would be that the long term benefit

(if he has reduced carnitine) far outweighs the short term discomfort to your

son.  I really do not know what would have become of my son without

levo-carnitine... and the B vitamins.  I am certain we would be in a very

different place developmentally today without them.

 

We are working with a geneticist.  Keep pushing and advocating, if you don't

like the information or answers you are getting for your son.  Best of luck and

let me know what you find out.

From: iam2l84t <mam78@...>

Subject: [ ] carnitine and low muscle tone - Alyssa

Date: Saturday, December 13, 2008, 8:13 AM

>

> Prescription carnitine has been a " rescue medication " for my son

with low muscle tone. He had labs and his carnitine was actually

reduced and taking the carnitine has raised his level to within normal

limits. My son could not bear weight on his legs until he began

carnitine and B12 supplements. . Within 30 days of starting carnitine

and 6 days starting B12/Bcomplex vitamins he took weight on his legs

for the first time ever. And after being on the carnitine and B

vitamins for 6 months (with PT) he began to walk!!!!!

>

> You might consider having his free and total carnitine levels

checked via lab work to make sure his carnitine level isn't reduced.

And you can give an l-carnitine supplement but if you do, it may skew

the childs labs. So decide if you want the lab work done first,

before starting a supplement.

Hi Alyssa,

Do you know how long it takes for carnitine levels to return to normal

for someone who has been taking carnitine supplements?

I'd like to have my son tested since I'm sure he lacks it but I read

somewhere that it can take a few weeks for levels set through

supplementation to come down. Do you know anything about this? I'm not

keen to deprive him of it for longer than necessary but I would like

to benefit from the prescription.

Thanks,