Re: Question regarding carnitine

[Guest guest]

(or anyone), is there any info re. what a HIGH carnitine level means? I

had my ped run a bunch of tests in December prior to starting the fish oils, and

she included a test to check his carnitine levels. She was surprised to see

that his carnitine level came back abnormally high. She did research on it and

couldn't find anything on what a high level might mean. I was curious if anyone

else had experienced this or heard anything about this.

Thx!

>

> Sharon I got lots of Tanner's testing done through his pediatrician and it was

covered by our insurance- really. Just cost me co pays. I believe if you go to

your pediatrician and share the findings you may be able to get him to run some

of the tests -just like Robin's neuro MD is running for her child.

> > > In case it helps, here is the list of tests she recommended:

> > > Urine amino & organic acids

> > > lactate

> > > pyruvate

> > > comprehensive metabolic profile

> > > plasma amino acids

> > > CBC

> > > CGH/Microarray

>

> But I would for sure get a second opinion on all the tests that were run. Not

that the testing was poor or anything like that -but you want to know for sure.

Just like nutriiveda somehow helped Mel Ketchum's brain why not find out if the

surges you are seeing have led to improvements in any of the previous testing.

>

> And...the one area of concern to me is the low carnitine testing. I have lots

about this in the archives -here's just a bit:

>

> Carnitine deficiency is far more common in our group of children then in the

general population. This is also reported in the autism literature as common in

ASD. If a child has low tone, part of the work-up should include plasma

carnitine (total and free), and acetyl-carnitine, and a complete metabolic

panel, CBC (basic labs).

>

> If tested low on carnitine supplement, the child's level would have

> been even lower prior to supplementation. Carnitine is benign, so to

> supplement without a deficiency won't hurt, but probably won't do

> much. However if truly carnitine deficient...you would want to know

> and get it worked up.

>

> Regardless of the cause of the deficiency...it will in itself cause

> problems.. Low levels are associated with sudden death!!!! Also with dilated

cardiomyopathy...another life threatening condition that is avoidable with

carnitine supplements. Supplements will IMMEDIATELY impact your measured plasma

level. It will not take months. But if carnitine is not absorbed or there is

rapid turnove, higher doses will be needed to get the level to normal.

>

> This is an important finding from the past few years...apraxia and carnitine

deficiency. More evidence that this is a medical syndrome and not a

developmental issue. All kids with apraxia should be screened for carnitine.

>

> Some links online:

>

> There is primary and secondary

> http://emedicine.medscape.com/article/942233-overview

> This one is just about primary

> http://ghr.nlm.nih.gov/condition=primarycarnitinedeficiency

> About secondary

> http://www.carnitormetabolic.com/secondary_deficiency.html

>

> Anyway I for sure would get on the phone next week with all the details from

this group- previous testing -and see if you can get those tests run again

through insurance through 's ped. Could be you won't have to go GFCF...but

if you do -nutriiveda is GFCF

>

> =====

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