Re: Starting Nutriiveda today and Deficiencies/carnitine

[Guest guest]

Without wanting to raise too much alarm but think all here should be aware...the

only nutritional/blood test I highly recommend for all in this group is to have

the base carnitine levels tested and it's important NOT to supplement with any

carnitine prior. I have an archive on this important issue below.

Now that your child is on NV...honestly? Honestly I would wait with the labs

for a month or two -ask the ped if that's OK. There are changes with NV that

are not explainable by anyone, medical research doctor or SLP included.

But...it does supply via food all of the essential amino acids -which means if

your child needed carnitine the body now has what it needs to make it which it

may have been lacking prior. It also replaces the need for a multi vitamin as

it contains the essential nutrients (except the essential fatty acids/fish oil)

and again all from food. Ingredient list is here

http://pursuitofresearch.org/products/nutriiveda/nutriiveda-ingredients/

Serving suggestion page

http://pursuitofresearch.org/products/nutriiveda/nv-serving-suggestions/

Recipe page http://pursuitofresearch.org/products/nutriiveda/nutriiveda-recipes/

And PS...no, never heard of giving a child medication prior to a blood test.

Curious to see if others have heard of this?

Below is more info on the carnitine -take this serious and discuss with the

pediatrician. Deficiency in this amino acid is typically rare- 1 in 40

thousand. I can't even tell you how many members here, out of the limited

amount that test for it -have tested either borderline or low. In most cases

the children here don't have primary but secondary deficiency so that's good.

What's not at all good are all the alternative doctors just randomly sticking

kids on carnitine without testing them for it first. A deficiency in carnitine

is something most would only know on autopsy -it helps support the muscles of

the body, including those that support the heart.

Re: L-Carnitine or Carnisone help with Speech ?

VERY IMPORTANT!!! You do not want to supplement with carnitine unless the child

is tested first because while you may not notice any change at ALL supplementing

with it -there is a much higher than normal percentage of children from this

group who test either low or borderline low in this amino acid I have more

below but if supplement you can skew the testing results going ahead and if one

is low in this amino acid you want to see a medical doctor, probably a

geneticist that specializes in metabolic disorders which is s rising medical

specialty as there are more and more diagnosed with metabolic disorders today.

Most find out one is low in carnitine during autopsy- it's linked to sudden

death if one is low in it as it helps support the muscles of the body -including

those that support the heart. Please educate yourself on this amino acid as

some alternative doctors just tell parents to give it to their child and as we

have what appears a much higher percentage than the norm low in this amino acid

-you want to get medical testing first prior to supplementation (did I say that

just once or twice? I hope twice)

If not low- supplement away -both are benign -but if you get too much carnitine

you'll smell fishy...as I go into this below -supplementing isn't the same as

getting the amino acids and essential amino acids from whole foods

In this group we have found moderate success with carnosine supplementation

(with an S see more here

http://www.cherabfoundation.org/2006/dha-higher-epa-bit-of-gla-and-what-about-ca\

\

rnosine ) - and both carnosine and carnitine are amino acids and benign as far

as I know to supplement with. I found I needed to give carnosine (also sold

mixed as a formula with other nutrients by Dr Chez as carnaware) on an on and

off basis for some reason. As I've learned since using nutriiveda which

contains all of the essential amino acids and others amino acids and all the

nutrients -all of it from whole food (balanced) sources the problem with just

supplementing is you don't know what the body is able to utilize -especially if

there are metabolic issues going on. I HIGHLY suggest you look into nutriiveda

as we are seeing similar results to supplementation of the essential fatty acids

with all the essential amino acids (and nutrients from whole foods) here are

some theories as to why http://pursuitofresearch.org/science.html

And here is a recent archive on this:

Re: Do any of you use Nutriiveda for yourlittle ones (under 3)?

I'd check with the doctor that prescribed all the supplements but I'd

highly recommend stopping the multivitamin as the nutriiveda contains all the

essential amino acids and nutrients and is or can be full meal and vitamin

replacement. http://pursuitofresearch.org/faq.html I'd also stop the probiotics

as the nutriiveda is so easily

digestible by the body and also just to make sure the probiotics don't

compromise whatever it is in the nutriiveda that is " working " for our children.

After all you can always start the probiotics again at some point and see if

they affect the nutriiveda in a positive or negative way. My son for example

we've tried numerous probiotics and he doesn't do well on them for some reason.

You can continue the fish oils but check the level of vitamin A in the dosage of

cod liver oil you are using (cod liver oil has vitamin A because unlike the oils

most of us use cod liver oil is made from the liver of the fish so naturally

contains the vitamin A...fish oils not made from the liver of the fish do not

contain vitamin A...just curious -have you tried the ProEFA?)

The carnitine if your child tested low in this area needs to be continued of

course for safety reasons as this is a nutrient that if your child tested low in

is typically a prescription quality and dosage and for life and death reasons

needs to be overseen by the geneticist or other medical doctor that prescribed

it. You probably know that the carnitine should be taken with food because it

can create stomach upset. Below is an archive on more on carnitine deficiency

and best of luck in getting to the root of your child's digestive issue of

vomiting so often! How terrible for all of you!

CARNITINE DEFICIENCY testing and archive

Just a reminder that carnitine unlike the amino acid carnitine is

something to take serious. You may not see changes on or off

supplementation but this is typically rare and appears to be high in

this group out of those children tested.

Also just wanted to point out that me and many others here had the

blood draws ordered through our regular pediatrician and the labs done

through medical labs -and if tested low the child is put onto

prescription carnitine with a referral to a geneticist that specializes in

metabolic disorders. Try the basics which mean appropriate therapies for your

child and the oil therapy and in most cases that alone will create remarkable

surges and you can save your time and money for karate and swimming lessons

-maybe some hippo therapy or a much needed vacation for the family. The

biomedical group if not needed is complex and expensive.

Here's more on carnitine from an archive

Re: Levocarnatine

Is what you are using prescription?

" Certain levocarnitine products have been specifically approved by

the U.S. Food and Drug Administration for medical use and are

available only with your doctor's prescription. Other levocarnitine

products are sold without a prescription as food supplements and

should not be used to treat serious levocarnitine deficiency. "

http://www.drugs.com/cons/levocarnitine.html

Not much if anything may change in the tone or speech -but that's

not the reason to supplement with prescription carnotine. The

possible side effect of sudden death from carnotine deficiency

outweighs any side effect of levocarnitine. If not -I suggest you

take your child to a medical doctor; preferably a geneticist who

specializes in metabolic disorders and there have been a few posted

here as recommendations. How much do you know/were you informed

about carnotine deficiency?

In this group out of those that did blood draws there was an

alarmingly high number that tested low in carnotine which is

typically rare. Here are some archives -first from Tina who's

apraxic child was doing really well -but she like I did the blood

draws just to check. While Tanner tested normal -Landon tested low

in carnotine:

" Going to a geneticist that specializes in metabolic disorders would

be very helpful. My understanding from what I have read a biopsy

helps confirm mito disorders. Lab work is first though. The link

below might help you find more answers.

http://www.umdf.org/site/c.dnJEKLNqFoG/b.3041929/

United Mitochondrial Disease Foundation

Landon's carnitine level was 23 normal was 25-70 in July. In Dec. it

was ran again and it was 76 again normal range 25-70. The geneticist

that specializes in metabolic disorders isn't concerned with his

Carnitine level being high. He did run a lab to see if it is coming

out in urine which is what would happen if it isn't being used up.

And he did run Carnitine again in Feb so it probably will be higher

than it was in Dec. We will probably have to adjust his dose.

Landon could come off Carnitine right now, but I thought it was

helping him some so the doctor said to continue. Regular blood test

should be done to check levels so dosing can be changed either

increased or lowered.

Here is an article that discusses Carnitine and CoQ10. It is a good

explanation, hope you all will take the time to read it from the top

to the bottom.

http://www.mdausa.org/publications/Quest/q61coq10.html

HTH,

Tina "

Some have suggested the better doctors in this area because

apparently there are not that many out there! Also while Kathy from

our group who I highly respect talks about an OTC brand -

highly advises against OTC for carntine if a child tests low. And

for those that don't know -do not supplement with carnotine unless

your pediatrician orders the blood draws that we talk about here

first. You want to know prior to supplementation if your child is

deficient.

More archives below

Unlike other supplements -a carnitine deficiency could come with the

most severe consequence over time since carnitine deficiency is

associated with sudden death. The good news is that at least you'll

know early -most people don't find out their child was deficient in

carnitine until it's too late. (we all heard about that football

player in HS with the sudden heart attack) Also how else are you

going to guarantee that not only are you going to give and keep

giving your child this supplement which they 'have' to take -but

that your child will know to monitor with his doctor and continue to

supplement if needed perhaps the rest of his or her life? This is

why you want to investigate this aggressively with a geneticist.

There are a few who have been recommended here as I understand that

there are not yet enough geneticist who specialize in metabolic or

mitochondrial disorders.

If found to have a carnitine deficiency, like your child, you would

want to take your child to a medical doctor that was knowledgeable

about what that means as this is not something to take lightly. It's

good to get the prescription form of carnitine so you know the

quality, correct dosage -overseen by an MD. Also once tested low in

caritine you would also want to discover why by taking your child to

a geneticist who specializes in metabolic disorders. I believe based

on the findings of blood analysis from this group that any child

going ahead diagnosed with apraxia or autism should be tested for a

carnitine deficiency. The numbers of children that tested low in this

amino acid were off the charts from feedback in our group from those that went

through testing. Typically it's a rare disorder affecting one in 20 to 40,000.

This was also the reason I took my son Tanner for all the blood testing -to test

for this one deficiency

since it can be so severe if left untreated.

" Impact of carnitine supplements may not be clinically obvious - but

could be

helping strengthen heart muscle. Low levels are associated with a

floppy

dilated weak heart, and when it approaches 10-20% of normal, sudden

death can

occur. Carnitine is essential for normal cell/mitochondria function.

It

allows fatty acids to get transported into the mitochondria (or the

battery

of the cell). Major problems if this is not working properly. So you

may be

getting benefits that you don't obviously see. One does not want to

run

around with a severe carnitine deficiency and not treat it. "

end of quote

Carnitine and Carnosine are 2 TOTALLY different supplements.

Carnitine plays a key role in transferring long-chain fatty acids

into the mitochondria.

There has been some research done on carnoSine (amino acids

histidine and alanine), and carnaware has carnoSine + vit E + zinc.

There have been some preliminary studies that show benefit of

carnaware in autism and other speech disorders. There are many

members with personal experience with both carnosine and carnoware.

I suspect the vitamin E of carnoware is contributing to benefits,

based on what vit E alone can do.

Without sufficient CarniTine...the mitochondria (or

cell " batteries " ) don't run very well. There can be symptoms from

muscle weakness, heart problems to severe brain and metabolic

abnormalities and in some (rare) cases... to the extreme of sudden

death from carnitine deficiency...depending on how severe and the

exact cause.

Carnitine deficiency is typically rare -around 1 in 40,000. I don't

know if the deficiency your child has is considered severe or not but

either way I'd check it out. In this group out of the few that did

blood draws an alarmingly high number tested low in this amino acid

and that's concerning for a number of reasons. The main one is that

there may be no sign of a carnitine deficiency -but it can have

serious affects if left untreated. If discovered consider it a

blessing as most don't know about this deficiency until it's " too

late " and it's easily treated by prescription carnitine.

The suggestion is that if a child tests low on carnitine to take him

to a geneticist who is a metabolic specialist for a complete work-

up. There have been a few suggestions for particular MDs posted

here.

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