Levocarnatine

July 22, 2008

Just started my 26 month old on this supplement from his DAN! Dr. and

I am giving it 3 times a day due to his blood test showing low

carnatine. Has anyone used Levocarnatine in addition to all of the

other supplements and has it helped with speech? Also, has anyone

experienced any side effects with thier children?

July 22, 2008

Our neurologist put our son on levocarnitine for same reason. He takes it 3

times a day in addition to COQ10. Not sure if we are really seeing any

differences. He seems to be improving, but not sure if it is due to medicine,

fish

oil, ABA, etc...

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July 22, 2008

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. As you'll be hearing more about this soon from

Dr. -the numbers of children that tested low in this

amino acid were off the charts. 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.

Here's some quotes from Dr. who is head of fellowship

research at her hospital -a pediatrician -and mom to an apraxic child

who also tested to be carnitine deficient. Below this is an archive

on this which includes all the testing which you can share with your

child's medical doctor to secure the testing. We did this with our

son's " regular " pediatrician and all the blood word was covered by

BC/BS.

" 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.

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.

I know very little about Carnosine...was planning to try it some

day, but then discovered vitamin E. Carnitine is harmless. If you

take too much, you will smell bad. Otherwise, harmless. It can cause

stomach upset, so should be taken with food. - "

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. Many of us including me took our child to get tested because

we respect Dr. who is a researcher/pediatrician and

mom to a 3 year old apraxic child. Many of us have children that are

considered doing " well " today -so in other words no sign that there

was any underlying issue. Besides -most don' consider apraxia a

disorder that has any serious health tone to it.

We were fortunate that Dr. is part of this group. I

am also fortunate in that my son Tanner tested normal -but I

recommend this testing for all here if the diagnosis is apraxia or

autism. I had the tests ordered through Tanner's pediatrician and

all was covered by our BC/BS insurance. Just share all the

information with your pediatrician. And , since your child

already tested low in carnitine -I'm sure it won't be an issue to

secure a referral to a specialist.

Below are a few archives on this -but there's much in the archives

here and all over the internet. Just search " carntine deficiency

also suggested here and in an email to me that if a child

does need to supplement with carnitine -that you don't just buy a

health food brand because " Carnitine. You don't want to just buy it

at the health food store. The forms they sell over the counter can

actually be harmful due to additives and the way it is made. L-

Carnitine that is definitely safe is only available in prescription

form "

and from an archive message from :

" Its really because you never know what you are getting...while

carnitor is regulated. Plus it gets covered by insurance...an added

benefit, as all these supplements start to add up and are fairly

costly.

My research background is in arginine metabolism, and I am involved

in several arginine clinical trials for diseases like sickle cell

disease and thalassemia. I never tell people to buy off the shelf

because you REALLY don't know what you are buying. None of the over

the counter supplements are regulated. There are fillers etc that

may have ingredients that are not necessily OK. So I buy my

arginine supplements for trials through distributers that can

demonstrated purity to > 99.99%.

But it is really important to get a carnitine level prior to

supplementing. Not that carnitine is harmful, even if you have

normal levels...but if your child has a carnitine deficiency...it

should be worked up further. - "

" No harm in supplements (ie very safe - if you give to much one

starts to smell fishy - ironically) and yes you could just start

supplementing without any health concerns. But honestly - a

carnitine deficiency is something you would want to identify first -

before supplementing. The results from bloodwork will not be

helpful otherwise once supplementing - since it could be normal.

One doesn't just have a carnitine deficiency for no reason. This is

something that should be worked up - aggressively, medically. So I

would seriously consider getting him checked prior to supplements "

and from the same email another clip:

" The benefits of carnitine (like those on the heart) - may not be

obvious (in

speech and muscle tone -the sort of thing we are looking for) and you

wouldn't

know you were making a difference. The carnitine deficiency that

ph had

could have led to serious cardiac complications over the next few

years if not

picked up. "

Information about vitamin E and blood draws you may want to consider

with your child's pediatrician from Dr. who is a

pediatrician and mom to an apraxic preschooler

R. , MD

Attending Physician

Director of Fellowship Research

Department of Emergency Medicine

Children's Hospital & Research Center at Oakland

747 52nd Street

Oakland, CA 94609

I really can't " advice " anyone. A lot of this new info is just that -

very new, and totally anecdotal. Your child is very young to make the

diagnosis of apraxia - so it is important for you to get a good

neurodevelopmental ped eval to help you set off in the right

direction, since intervention does differ depending on the diagnosis.

But just because the info isn't published...it doesn't make it

invalid. But all this needs to be confirmed in a clinical trial

before there will be broader applications and true recommendations

made.

What I can tell you that we have learned:

1. Gluten-sensitivity is common in apraxia as well as in kids with

autism spectrum disorder. Whether this is true celiac or some non-

celiac gluten-sensitivity with neurological complications remains

unknown.

2. Carnitine deficiency is common among our kids with apraxia. 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).

3. Vit E deficiency symptoms overlap those of global apraxia. However

when apraxic kids were tested, levels were all over the place, from

truly low (and important to identify) to very high even before

supplementation. If testing for Vit E, a good idea to screen for all

the fat soluble vits: ADEK. 2 children with apraxia and rickets were

also identified. Pre-treatment levels of vit E did not reflect

response to vit E supplementation.

4. If there are lots of GI symptoms, perhaps a malabsorption work-up

is indicated? Stinky poop that float, chronic diarrhea, abdominal

pain (all reasons to screen for celiac)...suggest possible

malabsorption. Screening stool studies include stool for pH,

reducing substances, and fecal fat. So far, ph is the only

apraxic kid I know that has had this done, and it is preliminarily

positive. He needs a bigger malabsorption work-up.

Malabsorption does not explain everything. I suspect this is going to

be a multifactorial problem. There is underlying inflammation in at

least all the " allergic " kids. This is likely also contributing to

increased consumption of antioxidants. But there may be even more to

the story, like abnormal transport of vit E or carnitine into cells

etc. We have alot to learn. Gluten-sensitivity is very common in

apraxic children. Of the children who reported bloodwork, 13/14 had

pos antigliadin antibodies. The 1/14 who was negative was actually my

son ph - gluten free since age 3 weeks, an negative celiac panel,

definitely gluten/wheat allergic clinically, and carries the genetic

HLA for gluten-sensitivity/celiac disease. So basically everyone who

tested and reported, had gluten-sensitivity. Clearly you can have a

negative screen and still be gluten-sensitive...like my boy,

especially if gluten free. But with a negative celiac panel...going

gluten-free would not be the first thing on my list to try. Other

allergens (like milk for example)...can also cause gut inflammation

if you are allergic to it. There are no really good allergy tests.

One can try RAST and skin testing...but its an imperfect science.

Best to be coordinated with a good pediatric allergist.

Print out the abstract below and give to your pediatrician. At least

they will know why you are asking for these things.

Presented as an oral presentation at the Annual Meeting of the

Pediatric Academy Societies, (Late-Breaking Platform Session)

Toronto, Cananda May 2007.

Title: Impact Of Vitamin E And Omega 3 Supplementation In Children

With Verbal Apraxia R , MD1 and Marilyn C Agin, MD.

1Emergency Medicine, Children's Hospital & Research Center Oakland,

Oakland, CA, United States.

I posted the abstract so people can print it out and give it to their

pediatricians. Our job as docs is to " do no harm " and there's a lot of

misinformation out there on every topic imaginable, with lots of

potential side effects. This is why evidence based medicine is such an

important topic. And when there is a new discovery - it should be

tested and published for the benefit of everyone...or it remains

anecdotal and will illicit skepticism. I don't fault your physician. I

am also skeptical of anecdotal treatments that don't get tested. If

its such a great new intervention - then it should make its way into a

clinical trial. Many " claims " are just not true, or fail to show

benefit in a clinical trial. When I first heard about omegas...I did

my homework. Although anecdotal in the apraxia world (like thousands

of families)...there is very good science behind its use in similar

conditions in the medical literature. Its not an unsupported idea.

Up until this point there really has been very little in the medical

literature on apraxia. But there is a ton of info out there on the

benefits of omega 3 for many illnesses, and in particular many

neurodevelopmental conditions like dyslexia, dyspraxia and ADHD. Dr.

MD has been a leader in this work. Vit E is a totally

new discovery as of August 2006. Therefore no one has heard about it

outside this group, and we are taught as physicians to be cautious

with fat-soluble vitamins....and that vitamin E is rarely deficient.

That notion will likely be changing over the next few years.

The abstract was peer reviewed and accepted in a very

competitive " Late-Breaking " oral platform session at the Pediatric

Academy Society meetings (your pediatrician should be familiar with

the American Academy of Pediatrics and the society for pediatric

research) in Toronto this May 2007. This is a scientific meeting, so

it's not something worth any non-medical person's time and energy to

go to. But from the science perspective of nutritional approaches to

apraxia...this is a major pediatric meeting, and is an excellent 1st

step in getting this info out to the medical community. In addition 5

boys with apraxia have been genetically (HLA) tested, and ALL 5 carry

the gene for gluten-sensitivity. This is much higher than one would

expect by chance. Somehow gluten-sensitivity is associated with this

syndrome in some of these kids. Hopefully the attention the topic

gets at the pediatric meetings will help me get funding for a trial.

Here is the abstract again for those who missed it. (Many of you

contributed to the data - and I thank you for that!).

Late-Breaker Abstract Presentations Monday, May 7 2007 Pediatric

Academic Societies' Annual Meeting 5570.8 Presentation Time 2:31 PM

Impact of Vitamin E and Omega 3 Supplementation in Children with

Verbal Apraxia R. , Marilyn C. Agin. Emergency

Medicine, Children's Hospital & Research Center Oakland, Oakland, CA.

BACKGROUND: Verbal apraxia (VA) is a neurologically-based motor

planning disorder of unknown etiology common in autism spectrum

disorders (ASD) that anecdotally responds to omega 3 polyunsaturated

fatty acid (PUFA) supplementation. Vitamin (vit) E deficiency causes

symptoms that overlap those of VA. PUFAs in the cell membrane are

vulnerable to lipid peroxidation & early destruction if vit E is not

readily available, potentially leading to neurological sequelae.

Inflammation of the gastrointestinal tract and gluten sensitivity may

contribute to malabsorption of nutrients such as vit E and carnitine,

contributing to fatty acid metabolism dysfunction and neurological

abnormalities. OBJECTIVE: Determine efficacy of vit E and

PUFA supplementation in children with VA.DESIGN/METHODS: 50 children

diagnosed with VA were treated with vit E + PUFA. 10 of these

children were known to have ASD. A celiac panel, fat soluable

vitamins, & carnitine level was obtained in patients having blood

analyzed. RESULTS: Age ranged from 2- 13 years, (majority < 5 yrs), &

38/50 were boys. A history of gastrointestinal symptoms, sensory

integration dysfunction, low muscle tone & coordination difficulties

(dyspraxia) was commonly reported. 48 families (96%) anecdotally

reported dramatic improvements in a number of areas including speech,

imitation, coordination, eye contact, behavior, sensory issues & the

development of pain sensation. 2 children experienced new tearful or

aggressive behavior within 3 days of initiating vit E (400 IU/d)

without apparent benefits in speech, & therapy was withdraw within a

week. No other adverse effects were reported. Plasma alpha tocopherol

levels varied in children tested (low in 2, high in 4 and normal in

4), however pre-treatment levels did not reflect clinical response.

Low plasma carnitine was identified in 13/14 (93%) children.

Antigliadin IgG antibodies were high in 9/11 (82%) children tested. 2

children reported vit D deficiency & early signs of rickets.

CONCLUSIONS: We describe a new disease paradigm of abnormal vit E &

fatty acid metabolism causing neurological dysfunction in VA that

responds to a safe nutritional intervention. The association of

carnitine deficiency & gluten sensitivity with VA is a novel

observation, suggesting that these children deserve a more

comprehensive metabolic work-up than what is current standard

practice. Larger controlled trials in apraxia & autism are warranted

Title: Syndrome of Allergy, Apraxia Malabsorption: Characterization

of a Neurodevelopmental Condition that Responds to Omega 3 Vitamin E

supplementation R , MD1,

July 22, 2008

We've been using L-Carnitine since last June. So it has been over a

year now. My son tested low (at age 3) at a level of 22 with a

reference range 32-62. We started with Carnitor at 750 ml/day split

into 3 doses. He became extremely hyper, got diarrhea, and had sleep

issues. We reduced the dose to 400 ml/day split into 2 doses with the

last dose at snack time and the side effects went away. We have

gradually, over the last year, increased the dose to 600 ml/day split

into 3 doses with no problems. In March, we tested him again, and his

carnitine is now at 47 which is right in the middle of the range.

BTW, We switched last fall to the generic levocarnitine instead of

Carnitor in order to save $$ ($30/month savings) and didn't notice any

difference.

I didn't notice any significant difference in my son's speech, but his

health has improved over the last year since we added the carnitine,

CoQ10, digestive enzymes, higher B vitamins, etc.

(Max's Mom)

>

> Just started my 26 month old on this supplement from his DAN! Dr. and

> I am giving it 3 times a day due to his blood test showing low

> carnatine. Has anyone used Levocarnatine in addition to all of the

> other supplements and has it helped with speech? Also, has anyone

> experienced any side effects with thier children?

>

July 22, 2008

Interesting to read about this . We've just recently tested and I'm not

sure what the results are, we'll find out in August at our next biomed apt. But

my daughter is gluten/casein/soy/corn + others intolerant, w/ obvious symptoms

such as skin eczema and scalp psoriasis, persistent yeast problems, and

difficulty detoxifying mercury plus very low CoQ10, folate, vitamin C and very

low Omega 3 even though I was giving her massive doses since birth but due to

her leaky gut she was not absorbing. No digestive symptoms though, which is why

it took us 3 years to identify her metabolic disorder and in fact all the issues

started when I weaned her and introduced wheat and caw's milk after 14 months,

so that's another clue right there. Plus family history, now in hindsight.

We've been giving her the B12 shots since April --correctly giving them since

April because the first 2 months we were doing them too deep and she was peeing

them right out instead of gradually releasing them from her fat. Anyway, we've

not done the lab tests recommended by Dr. until recently and as I said

won't know the results for another month, but I would not be at all surprised if

they are also off given the rest of her lab tests. So for us so far the diet has

produced a huge leap, but has been broken knowingly on at least some occasions

(at special ed preschool they gave her gold fish instead of her snack sitting

right in front of her--new staff member and no process to warn/train them about

special diet kids--and other accidental contaminations via eating out sauces and

things which we try to control, but when you don't cook it yourself it's hard to

know how seriously people take your request to just have grilled chicken with

nothing on

it an d plain boiled rice and steamed broccoli. I find that almost always

there's preprocessed stuff with butter, marinade etc. and they don't even bother

to wash it off sometimes and you can't really tell until after they bring it to

the table where it's mostly a hunch, but you've got a hungry child, what are you

going to do?

So, the diet made a big difference in her ability to focus and stay on task,

behaviorally mostly and then the B12 shots really helped kick in her speech. It

was huge, in just a few days and then in a few weeks she was rolling, a

different child. Went from barely 45 words understood by others back in

December to over 205 now and constantly growing, 2 and 3 word sentences and

she's describing feelings, when it hurts, where ,what she likes, wants doesn't

like/want. It's HUGE!! So for us this totally seems the right path and it's

interesting to read about the carnitine because apparently if this is off,

that's what can create a lot of malabsorptions at the cellular level especially.

She's a healthy weight child, so definitely she is absorbing nutrients in that

sense, but brain nutrients, that's another story, that's where these deficits

are most apparent. What were your child's health symptoms, the ones you were

saying have now improved? Was it

just the lab work?

Now I understand from Dr. that with vitamin E for example the plasma

levels can be very different than the levels the brain cells receive. Could

this also be the case with carnitine? How can we tell? Have you asked your

doctor? Are you also giving the fish oil/vitamin D combo? Does your child have

other symptoms besides speech apraxia. Mine had those too but very minor (slight

toe walking on and off, hypotonic tongue in relaxed play or very concentrated,

hypotonic upper trunk and upper lip mouth face hyper sensitivity--all of which

actually got worse after the B12 shots for a few days or so, almost as if she

was experiencing things she'd never felt before. Just curious about these

things because it always helps to know how and what is working for others with

similar situations.

Hey, I'm not waiting for those clinical studies to prove anything since given

the highly individualized approaches, may not even be possible, and the

financial stakes and conflict of interests that are rampant in clinical --read

Big Pharma led research, it may all take decades to amount to anything in terms

of recommended guidelines. By then the environmental toxicity levels and

neurological dysfunction among the young and old may have increased so much that

it will be a wonder why they didn't do anything sooner, so I'm willing to go by

what I know now. I have all the proof I need that my child has metabolic

disorders that are affecting her neurologically and immunologically, it's just a

matter of tweaking the supplements and getting to the root of the cause as much

as possible-.

So any additional info on the carnitine would help. i know my husband is

reluctant to add new supplements, particularly if we're told the lab tests may

not really mean much for how it all manifests at the braincell level. It's

tricky, but worth exploring for sure. Thank you.

Elena --mom to Ziana- age 3.11--severely apraxic but otherwise a healthy happy

child and preogressing steadily now that appropriate speech

therapy/diet/supplements have been implemented--but there's always room for

improvement so I'm always researching and searching...

From: epoxycozy <epoxycozy@...>

Subject: [ ] Re: Levocarnatine

Date: Tuesday, July 22, 2008, 9:47 PM