Re: Re: Carnitine or Vitamin E

[Guest guest]

What is the dosage for ALC?

[sPAM]Re:[childrens apraxianet] Re: Carnitine or Vitamin E

Janice I say that carnotine is benign -but a deficiency may have no

symptoms but is linked to sudden death. A deficiency in carnitine is

typically very rare- so to me as a parent of a child that falls into

this group it was alarming how here many are testing low. Here's some

information on the various types of carnitine deficiency from NORD

http://www.bchealth guide.org/ kbase/nord/ nord60.htm

Whether you supplement with vitamin E or not is not a life and death

decision -carnitine could be. As it says in the link below

" the first clinical manifestation in asymptomatic individuals with

primary carnitine deficiency may be sudden death. This also may occur

in patients with secondary carnitine deficiency as a consequence of

ventricular tachycardia or fibrillation. "

http://www.emedicin e.com/ped/ byname/carnitine -deficiency. htm

To me it's a no brainer to make sure you get your child tested prior

to supplementation. I know you are in Canada so perhaps it's harder

to get the blood draws covered as I'm not familiar with health

coverage there -but here in the US if you know how to advocate you

can get these blood draws ordered by your child's pediatrician and

covered by insurance. As parents most of us (you too right?) come up

with private out of pocket payment for alternative treatment even if

it's not covered.

If the research ever gets funded one day a diagnosis of apraxia will

probably mean an automatic testing. For now we have the group

results. As always it's up to each of us as parents to take the

information shared here and make the decision you believe best for

your child or children.

It would be pretty clear if you were deficient in vitamin E -in other

words you'd get a warning. Again as it says all over the net -the

way most people learn a loved one is deficient in carnitine is after

they die during autopsy -there may be no signs at all during life.

(which means you have to supplement even with no WOW changes)

Below are cuts about vitamin E and carnitine deficiency from

reputable sources. If after reading this one chooses to just

supplement at least I know I can't feel guilty that I did not share

this.

(BTW I was told you can supplement E and fish oil without testing)

Vitamin E deficiency is rare in humans. There are three specific

situations when a vitamin E deficiency is likely to occur.

persons who cannot absorb dietary fat due to an inability to secrete

bile or with rare disorders of fat metabolism are at risk of vitamin

E deficiency [8];

individuals with rare genetic abnormalities in the alpha-tocopherol

transfer protein are at risk of vitamin E deficiency [9]; and

premature, very low birth weight infants (birth weights less than

1500 grams, or 3 pounds, 4 ounces) are at risk of vitamin E

deficiency [3,10].

Blood levels of vitamin E may also be decreased with zinc deficiency

[11]. Vitamin E deficiency is usually characterized by neurological

problems associated with nerve degeneration in hands and feet [5].

These symptoms are also associated with other medical conditions. A

physician can determine if they are the result of a vitamin E

deficiency or are from another cause.

http://ods.od. nih.gov/FACTSHEE TS/VITAMINE. ASP#h4

" Carnitine deficiency

Sudden death: Unfortunately, the first clinical manifestation in

asymptomatic individuals with primary carnitine deficiency may be

sudden death. This also may occur in patients with secondary

carnitine deficiency as a consequence of ventricular tachycardia or

fibrillation.

Heart failure: Patients with primary carnitine deficiency develop a

progressive cardiomyopathy that usually presents at a later age. The

cardiac function does not respond to inotropes or diuretics. If the

condition is not diagnosed correctly and no carnitine is

supplemented, progressive heart failure eventually leads to death.

Heart failure caused by dilated cardiomyopathy may be the presenting

syndrome in patients with secondary carnitine deficiency caused by

defects in beta-oxidation, such as long-chain 3-hydroxyacyl- CoA

dehydrogenase (LCHAD) and very long-chain acyl-CoA dehydrogenase

(VLCAD) deficiency.

Hypoglycemic hypoketotic encephalopathy: Acute encephalopathy

accompanied by hypoketotic hypoglycemic episodes usually presents in

younger infants with primary carnitine deficiency. Periods of fasting

in association with viral illness trigger these acute episodes. Some

patients have developmental delay and central nervous system

dysfunction associated with these episodes. If no carnitine

replacement is given, recurrent episodes of encephalopathy may ensue. "

http://www.emedicin e.com/ped/ byname/carnitine -deficiency. htm

As a parent if you compare testing for a carnitine deficiency to a

vitamin E deficiency - it's possible that you don't really understand

it and thus even if you stay on top of it while he's living in your

home - your child won't know of the extreme importance of staying on

top of this with a medical doctor once he's out of your house. I was

also told by that it's best to have the prescription

carnitine so you are sure of the quality vs. OTC.

My fear is that being the numbers are high here and our group started

around 10 years ago -10 years from now I don't want to hear about any

sudden deaths. Also the advice is not my advice -it's the advice

from medical doctors like Dr. .

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[Guest guest]

Disregard; I found my notes on ALC.