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Re: WAS: yet another MR NOW: Food and behavior story (sorry -- long!)

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,

Thank you for your very detailed responce. I appreciate it! Just

curious, is your son on any other supplements, other then the

enzymes, specifically EFA's?

Dawn in NJ

>

> I have a recent personal experience to share regarding food and

> behavior. has been doing so well in kindergarten and with

> his NACD program, knows about 100 sight words, doesn't qualify for

> speech or OT, and has had excellent behavior reports from school --

> until this week. His teacher has said more than once that he is a

> typical (boy) student, and that she would never have known about

his

> previous issues if I had not brought them to her attention. He

even

> got a special certificate for excellence the first week back from

> Christmas break, because he transitioned back to school BETTER than

> most!

>

> Because we do not have lab tests confirming food allergies, my

> husband has often thought that an infraction here and there is

> harmless, especially since we use digestive enzymes. It is,

however,

> a slippery slope. First, it was dinner out for pizza once a month,

> this month we went out every weekend. I also let him eat whatever

he

> wanted at the class Valentine's Day party. At the same time, Girl

> Scout cookies and Valentine's Day candy entered the house in a big

> way. (I am a Brownie leader.) Some have dairy, some don't, but

all

> have ARTIFICIALS. At first, we both thought we might be getting

away

> with something, then we received a note from his teacher. Here is

an

> excerpt:

>

> " I am writing to let you know that over the past few weeks I have

> noticed a significant change in 's behavior. Normally, I

> would hardly ever need to speak to , but lately, I need to

> speak with him up to 10 times a day. Some of the behavior I am

> observing includes being very active, not sitting in his chair, and

a

> lack of following instructions. He truly seems unable to control

> himself at times. I have observed kicking and jumping on

> things (nap mats & backpacks.) "

>

> As described by his teacher in this note and the follow-up

> conversation, he has turned into ADHD kid practically overnight!

In

> addition to what she described, we have noticed the following at

home:

>

> --He is having increased difficulty paying attention during program

> work. (e.g. After doing his new set of sight words for a whole

> week, I checked to see how many he knew. Normally, he knows about

75%

> + after one week. He knew 0%!)

>

> --His handwriting has been inconsistently terrible. Occasionally,

he

> can write a single word neatly, but mostly it's sloppy. Drawing

> skills have been less detailed.

>

> --Lots of crying over nothing.

>

> --Uncooperative across the board.

>

> --Spitting at his sister.

>

> --Sour mood, even when he should be happy. (e.g. no veggies at

> dinner, playing with favorite toys, I said " yes " to something like

> watching TV)

>

> --Softer BM's and also touching his private areas occasionally.

(The

> latter is totally new.)

>

> During this time period, he has not been sick, changed sleep

habits,

> added or subtracted any supplements, or had any major life changes

of

> any kind.

>

> Unfortunately, because of the nature of the infractions, the

> detective work is a bit more complicated than normal. It could be

> the dairy infraction (always a favorite target here), but I have

two

> other possibilities as well. His enzymes work on dairy, but they

do

> not work on artificals, so given the sharp turn in his behavior

that

> could be the real culprit. Other than the cookies, eats a

> 100% artifical-free diet with almost no MSG or HFCS (except the

> occasional restaurant meal, which may be tainted with any of those

> things.)

>

> Another possibility is that it could be a yeast problem due to the

> sugar in the cookies. While dairy can feed yeast, none of the

> infractions were a full-blown milk item like straight milk or

yogurt.

>

> It could also be a little of all three.

>

> Either way, my husband is now on board with the no dairy, no

> artificials components, and we were already on a restaurant ban due

> to the naughtiness on our last visit. (Tyler in particular.)

>

> This is just one personal experience and not generally applicable.

> However, it does point to the effect diet can have on behavior and

> also to the difficult in nailing down the culprit, even when there

> haven't been other major changes going on.

>

> For anyone considering dietary changes to improve their children's

> skills or behavior, eliminating artifical colors, flavors,

sweetners,

> and preservatives should absolutely be the first step. It is by

far

> the easiest dietary intervention, and you may see complete success

> without eliminating any typically-allergenic foods. Check out the

> Feingold program website for a lot more informationon this topic.

> (We eliminated artificals back when he was in preschool, and it

took

> us far, but not the whole way. We still needed to get rid of the

> dairy.) Eliminating MSG and HFCS (high fructose corn syrup) should

> also be strongly considered.

>

>

> in NJ

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Re: touching his private areas occasionally

That sounds like yeast.

Re: writing difficulties. A friend of mine has an ASD son who really

can't handle sugar. When he gets it he loses his drawing ability

which is horrible considering he is particularly skilled at drawing.

The particular epsisode I am recalling involved red hots so perhaps a

dye is an issue for that boy as well.

One thing I will say about the dairy: for some reason, whene ver I

tested cheese, while it caused discomfort in me and mine, it did not

seem to stir up the issues outright milk and ice cream or even yogurt

did. Seems to me not all infractions carry equal weight if that helps

your detective work.

> > > >

> > > > Dawn,

> > > >

> > > > You have a very bright and wonderful child. I wish you great

> > > success in

> > > > finding whatever she needs to help the world see the smart

and

> > > ingenius

> > > > little girl you have always known her to be.

> > > >

> > > > For what it is worth, a lot of my reading seems to point to

> > > metabolic

> > > > and allergy as a factor in spotty and inconsistent

performance.

> > If

> > > you

> > > > need help looking or the list of docs I am considering

talking

> to

> > > in

> > > > this area to rule things in or out for my guy please feel

free

> to

> > > email

> > > > me on or offlist.

> > > >

> > > > Best Wishes!

> > > > Liz

> > > >

> > >

> >

>

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Right now in the AM:

--1 EPA and 1 EFA

--children's probiotic

--2 carnitine*

--gummy multivitamin

In the PM:

--1 EPA and 1 EFA

--1 carnitine*

--1 CoQ10

Additionally:

--2 TriEnza enzymes with every meal and snack.

--epsom salts baths 2-3x/week

--used to take a calcium supplement, now drinks fortified hemp milk

and fortified orange juice every day

*I'm stopping the carnitine for now for two reasons. One, I saw no

obvious benefit over the last two months. Two, it might possibly

feed yeast, which might possibly be a problem right now. I will

continue the CoQ10, which I introduced at the same time because it

works synergistically with carnitine, because it seems like a good

idea based on my research, and I haven't found anything that suggests

it feeds yeast.

I was also planning on re-starting vitamin E, but I'm going to lay

off any further changes until the behavior settles back down. Also

considering additional vitamin C and am wondering if I can talk his

regular pediatrician into prescribed the mB12 shots.

At one point, we went quite high with the fish oil and vitamin E. We

saw benefits at slightly higher doses, but at the highest dose he was

hyper and repeated everything three times before you even had a

chance to hear him. At highest levels of vitamin E, he got weird

bruising. We added K to counteract that, but ultimately I felt the

dose was too high. Vitamin E was the one vitamin that took some

getting used to. My memory is vague, but I think it made him hyper

and uncooperative when he first started. Fish oils were a breeze to

introduce and increase. It was all good 'til we went too high.

> >

> > I have a recent personal experience to share regarding food and

> > behavior. has been doing so well in kindergarten and

with

> > his NACD program, knows about 100 sight words, doesn't qualify

for

> > speech or OT, and has had excellent behavior reports from school -

-

> > until this week. His teacher has said more than once that he is

a

> > typical (boy) student, and that she would never have known about

> his

> > previous issues if I had not brought them to her attention. He

> even

> > got a special certificate for excellence the first week back from

> > Christmas break, because he transitioned back to school BETTER

than

> > most!

> >

> > Because we do not have lab tests confirming food allergies, my

> > husband has often thought that an infraction here and there is

> > harmless, especially since we use digestive enzymes. It is,

> however,

> > a slippery slope. First, it was dinner out for pizza once a

month,

> > this month we went out every weekend. I also let him eat

whatever

> he

> > wanted at the class Valentine's Day party. At the same time,

Girl

> > Scout cookies and Valentine's Day candy entered the house in a

big

> > way. (I am a Brownie leader.) Some have dairy, some don't, but

> all

> > have ARTIFICIALS. At first, we both thought we might be getting

> away

> > with something, then we received a note from his teacher. Here

is

> an

> > excerpt:

> >

> > " I am writing to let you know that over the past few weeks I have

> > noticed a significant change in 's behavior. Normally, I

> > would hardly ever need to speak to , but lately, I need to

> > speak with him up to 10 times a day. Some of the behavior I am

> > observing includes being very active, not sitting in his chair,

and

> a

> > lack of following instructions. He truly seems unable to control

> > himself at times. I have observed kicking and jumping on

> > things (nap mats & backpacks.) "

> >

> > As described by his teacher in this note and the follow-up

> > conversation, he has turned into ADHD kid practically overnight!

> In

> > addition to what she described, we have noticed the following at

> home:

> >

> > --He is having increased difficulty paying attention during

program

> > work. (e.g. After doing his new set of sight words for a whole

> > week, I checked to see how many he knew. Normally, he knows

about

> 75%

> > + after one week. He knew 0%!)

> >

> > --His handwriting has been inconsistently terrible.

Occasionally,

> he

> > can write a single word neatly, but mostly it's sloppy. Drawing

> > skills have been less detailed.

> >

> > --Lots of crying over nothing.

> >

> > --Uncooperative across the board.

> >

> > --Spitting at his sister.

> >

> > --Sour mood, even when he should be happy. (e.g. no veggies at

> > dinner, playing with favorite toys, I said " yes " to something

like

> > watching TV)

> >

> > --Softer BM's and also touching his private areas occasionally.

> (The

> > latter is totally new.)

> >

> > During this time period, he has not been sick, changed sleep

> habits,

> > added or subtracted any supplements, or had any major life

changes

> of

> > any kind.

> >

> > Unfortunately, because of the nature of the infractions, the

> > detective work is a bit more complicated than normal. It could

be

> > the dairy infraction (always a favorite target here), but I have

> two

> > other possibilities as well. His enzymes work on dairy, but they

> do

> > not work on artificals, so given the sharp turn in his behavior

> that

> > could be the real culprit. Other than the cookies, eats a

> > 100% artifical-free diet with almost no MSG or HFCS (except the

> > occasional restaurant meal, which may be tainted with any of

those

> > things.)

> >

> > Another possibility is that it could be a yeast problem due to

the

> > sugar in the cookies. While dairy can feed yeast, none of the

> > infractions were a full-blown milk item like straight milk or

> yogurt.

> >

> > It could also be a little of all three.

> >

> > Either way, my husband is now on board with the no dairy, no

> > artificials components, and we were already on a restaurant ban

due

> > to the naughtiness on our last visit. (Tyler in particular.)

> >

> > This is just one personal experience and not generally

applicable.

> > However, it does point to the effect diet can have on behavior

and

> > also to the difficult in nailing down the culprit, even when

there

> > haven't been other major changes going on.

> >

> > For anyone considering dietary changes to improve their

children's

> > skills or behavior, eliminating artifical colors, flavors,

> sweetners,

> > and preservatives should absolutely be the first step. It is by

> far

> > the easiest dietary intervention, and you may see complete

success

> > without eliminating any typically-allergenic foods. Check out

the

> > Feingold program website for a lot more informationon this

topic.

> > (We eliminated artificals back when he was in preschool, and it

> took

> > us far, but not the whole way. We still needed to get rid of the

> > dairy.) Eliminating MSG and HFCS (high fructose corn syrup)

should

> > also be strongly considered.

> >

> >

> > in NJ

>

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Honestly, I have no idea. My sister reads the " Enzymes and Autism "

board every day, where yeast is always a big deal, and Dana (of

www.danasview.net) recently posted about that. Her posts are concise,

so there was no detail given. I plan to try to research this more, but

that Dana KNOWS yeast. (I used to read that board, too.) That said,

if it was doing anything for us I would continue and just fight yeast

more. Since it's neutral, I dumped it for now. In general, carnitine

doesn't seem to have the big " wow " effect that fish oil, vitamin E,

etc. have, but that doesn't mean its not useful for some.

>

> Why would carnitine feed yeast?

>

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For those that didn't do the blood testing yet through their child's

pediatrician -please do not supplement with carnotine at all until

you do. If your child tests low in carnitine (not carnosine) then he

or she will have to be on a prescription dosage the rest of his or

her life. This is not to scare anyone but important information.

The following email will explain more.

(And note to Liz -again please post credible links when you make what

called little comments like " carnotine feeds yeast " -if you can

find any.)

~~~~~~~~~~~~~~~important info on carnotine archive

Re: Carnitine???

Hi Trish, I hope I can help!

Many people in this group (including me) supplemented their speech

impaired child with either or both carn-aware ( http://www.carn-aware.com )

and/or carnosine. Carn-aware is a product name for a

supplement that contains mainly carnosine with other ingredients -

zinc and ('s gonna love this) " vitamin E " . Carn-aware did

work for many of the children as far as us seeing some type of

surge -and it was found successful in some clinical trials -here's

is some history on it

http://www.cherab.org/information/dietaryeffects/carnosine.html

http://www.speechville.com/alternative-therapy/carnosine.html

Some of us (including me) also used the carnosine because it's less

expensive then the carn-aware because you can purchase it in pure

powder form. I used to mix the carn-aware powder (from capsules) and

carnosine

powder together too. Tanner's no longer on either carnaware or

carnosine -but it did appear to be one of the things that helped

along the way as you can read in the links above.

For carnotine you 'do' want to get the testing done first to see if

there is a deficiency because:

From a direct quote from pediatrician/parent member here Dr.

from an email to me (not to scare anyone...but)

" 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. "

To repeat the points raised -a carnitine deficiency is

something you want to know about because it could be serious...and

once you start supplementing it may be hard to know if there was a

carnitine deficiency prior. And...for a less serious

reason -too much carnitine causes one to smell " fishy " So I'd say

no to just supplementing this one prior to blood work!

The name may sound almost the

same as carnosine -but they are different.

" L-Carnitine

L-Carnitine is an amino acid manufactured in your liver from the

amino acids

lysine & methionine. It is found in muscle & organ meats in the human

diet.

Vegetarians are susceptible to deficiencies of all 3 of the above

amino acids.

L-Carnitine plays an important role in converting fat into energy. It

transfers

fatty acids in the cell to the mitochondria (the energy engine) which

uses the

fatty acids as fuel to generate energy. It assists in regulating fat

metabolism

in your heart & skeletal muscles.

A lack of carnitine can result in buildup of fat & add to problems of

obesity.

The first sign of carnitine deficiency is hypoglycemia, which, if

unchecked can

lead to progressive muscular weakness, muscle disorders, heart tissue

damage,

increased triglycerides, a breakdown of muscle tissue & irregular

muscle

function.

L-Carnitine can be helpful for:

Ischemic heart disease.

Congestive heart failure.

Increased triglycerides.

Liver disease.

Those on dialysis.

Blood sugar stabilization.

Increasing energy.

Muscle weakness & disorders.

Endurance training.

Body fat reduction.

Vegetarianism.

L-Carnosine

is a product of the amino acid histidine & has free radical scavenging

properties.

L-Histidine

L-histidine is an essential amino acid. Most of our histidine must

come from our

diets, but small amounts can be synthesized from glutamic acid &

carnosine.

Histidine has anti-inflammatory properties. It is the only amino acid

found to

be consistently low in the blood of those with rheumatoid arthritis.

It is also

low in the lubricating fluid in the joints. Whiskey significantly

decreases

histidine levels. Rheumatoid arthritis patients should avoid alcohol.

Histidine can convert to histamine, which is a major neurotransmitter

in your

brain & throughout parts of your nervous system. However, histidine

intake does

not always increase brain histamine, Low brain histamine levels are

associated

with hyperactivity, mania, paranoia, hallucinations, & abnormal

thoughts. Many

brain functions of histamine are poorly understood but it is thought

to

participate in the secretion of 2 hormones, (prolactin &

antidiuretic). It is

thought to aid temperature regulation & be involved in the control of

automatic

nerve response in the central nervous system.

Vitamin E deficiency will cause the depletion of histidine from

muscles.

Histidine is involved with the regulation of zinc levels in your

body. If zinc

is excessive it will lower histidine; if histidine is excessive it

will decrease

zinc levels. But appropriate levels of histidine enhance zinc levels.

Histidine:

Enhances wound healing,

Is essential for tissue growth & repair.

Is helpful with rheumatoid arthritis.

Is important for red blood cell health. Deficiency will cause

decreased

hemoglobin & hematocrit, ultimately leading to anemia.

Helps store glucose in your liver. "

http://www.findhealer.com/glossary/L.php3

As far as who does the testing....I have a " normal " ped for my kids

from Florida and all I did was supply him with documentation from

Dr. and also shared her background.

Some of you may not be aware that is a respected researcher:

R. , MD

Attending Physician

Director of Fellowship Research

Pediatric Emergency Medicine

Department of Emergency Medicine

Children's Hospital & Research Center at Oakland

747 52nd Street

Oakland, CA 94609

" R. , MD, is a board certified pediatric emergency

medicine physician and the director of fellowship research for the

pediatric emergency medicine fellowship. Her research interests

focus translational research in sickle cell disease, pulmonary

hypertension and asthma. Dr. published the first

investigation to evaluate a potential new therapy for the treatment

of secondary pulmonary hypertension in sickle cell disease, a study

that made the " Top ten publications list in pulmonary vascular

disease " in Chest this year.

Dr. has been a guest speaker nationally and internationally,

with most recent presentations given at the European Respiratory

Society Meeting in Copenhagen, Denmark in September 2005 ( " Pulmonary

complications of hemoglobinopathies with a focus on sickle cell

disease " ), and at the Nitric Oxide Gordon Research Conference in II

Ciocco, Italy in May 2005 ( " Role of arginine depletion in asthma and

pulmonary hypertension " ). Dr. is particularly interested in

the role of low arginine and nitric oxide bioavailability in sickle

cell disease as well as asthma, and novel treatments for pulmonary

hypertension that target this mechanism. "

http://www.chori.org/Principal_Investigators/_/morris_overview.html

Tanner's pediatrician found it all very interesting and was open to

writing the prescription for the blood testing even without knowing

anything about what we are seeing. It would be the most cost

effective, easy way to get the process started. For me, if my ped

did " laugh " at me or found this whole thing to be just nuts after

reading 's suggestions, results with her own child, and

background...I'd switch pediatricians. Who needs an MD that's so

in the box they may miss any other new information as well. And as

far as other professionals doing the testing -if you have the money

to go the DAN route to start and make sure it's someone with a

medical background in pediatric neurodevelopmental medicine or at

least pediatric medicine (you can be a Dan " doc " and not even be an

MD FYI) that's always an option.

As it's been posted prior we are charting unknown territory and as

far as I'm concerned the main people that know the most about any of

this are already part of this group...and leading the way on how

vitamin E may contribute to the fish oil with knowledge about

carnitine and more... is one member here we are all fortunate to

have -Dr. !

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. - "

You still may be confused -but you have to feel a bit more

informed...right?

=====

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Guest guest

I was asking a question as I found no links stating that.

>

> For those that didn't do the blood testing yet through their child's

> pediatrician -please do not supplement with carnotine at all until

> you do. If your child tests low in carnitine (not carnosine) then

he

> or she will have to be on a prescription dosage the rest of his or

> her life. This is not to scare anyone but important information.

> The following email will explain more.

>

> (And note to Liz -again please post credible links when you make

what

> called little comments like " carnotine feeds yeast " -if you

can

> find any.)

>

> ~~~~~~~~~~~~~~~important info on carnotine archive

>

> Re: Carnitine???

>

>

> Hi Trish, I hope I can help!

>

> Many people in this group (including me) supplemented their speech

> impaired child with either or both carn-aware ( http://www.carn-

aware.com )

> and/or carnosine. Carn-aware is a product name for a

> supplement that contains mainly carnosine with other ingredients -

> zinc and ('s gonna love this) " vitamin E " . Carn-aware did

> work for many of the children as far as us seeing some type of

> surge -and it was found successful in some clinical trials -here's

> is some history on it

> http://www.cherab.org/information/dietaryeffects/carnosine.html

> http://www.speechville.com/alternative-therapy/carnosine.html

>

> Some of us (including me) also used the carnosine because it's less

> expensive then the carn-aware because you can purchase it in pure

> powder form. I used to mix the carn-aware powder (from capsules) and

> carnosine

> powder together too. Tanner's no longer on either carnaware or

> carnosine -but it did appear to be one of the things that helped

> along the way as you can read in the links above.

>

> For carnotine you 'do' want to get the testing done first to see if

> there is a deficiency because:

> From a direct quote from pediatrician/parent member here Dr.

> from an email to me (not to scare anyone...but)

>

> " 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. "

>

> To repeat the points raised -a carnitine deficiency is

> something you want to know about because it could be serious...and

> once you start supplementing it may be hard to know if there was a

> carnitine deficiency prior. And...for a less serious

> reason -too much carnitine causes one to smell " fishy " So I'd say

> no to just supplementing this one prior to blood work!

> The name may sound almost the

> same as carnosine -but they are different.

> " L-Carnitine

> L-Carnitine is an amino acid manufactured in your liver from the

> amino acids

> lysine & methionine. It is found in muscle & organ meats in the

human

> diet.

> Vegetarians are susceptible to deficiencies of all 3 of the above

> amino acids.

> L-Carnitine plays an important role in converting fat into energy.

It

> transfers

> fatty acids in the cell to the mitochondria (the energy engine)

which

> uses the

> fatty acids as fuel to generate energy. It assists in regulating fat

> metabolism

> in your heart & skeletal muscles.

> A lack of carnitine can result in buildup of fat & add to problems

of

> obesity.

>

> The first sign of carnitine deficiency is hypoglycemia, which, if

> unchecked can

> lead to progressive muscular weakness, muscle disorders, heart

tissue

> damage,

> increased triglycerides, a breakdown of muscle tissue & irregular

> muscle

> function.

>

> L-Carnitine can be helpful for:

>

> Ischemic heart disease.

> Congestive heart failure.

> Increased triglycerides.

> Liver disease.

> Those on dialysis.

> Blood sugar stabilization.

> Increasing energy.

> Muscle weakness & disorders.

> Endurance training.

> Body fat reduction.

> Vegetarianism.

>

> L-Carnosine

> is a product of the amino acid histidine & has free radical

scavenging

> properties.

>

> L-Histidine

> L-histidine is an essential amino acid. Most of our histidine must

> come from our

> diets, but small amounts can be synthesized from glutamic acid &

> carnosine.

> Histidine has anti-inflammatory properties. It is the only amino

acid

> found to

> be consistently low in the blood of those with rheumatoid arthritis.

> It is also

> low in the lubricating fluid in the joints. Whiskey significantly

> decreases

> histidine levels. Rheumatoid arthritis patients should avoid

alcohol.

>

> Histidine can convert to histamine, which is a major

neurotransmitter

> in your

> brain & throughout parts of your nervous system. However, histidine

> intake does

> not always increase brain histamine, Low brain histamine levels are

> associated

> with hyperactivity, mania, paranoia, hallucinations, & abnormal

> thoughts. Many

> brain functions of histamine are poorly understood but it is thought

> to

> participate in the secretion of 2 hormones, (prolactin &

> antidiuretic). It is

> thought to aid temperature regulation & be involved in the control

of

> automatic

> nerve response in the central nervous system.

>

> Vitamin E deficiency will cause the depletion of histidine from

> muscles.

> Histidine is involved with the regulation of zinc levels in your

> body. If zinc

> is excessive it will lower histidine; if histidine is excessive it

> will decrease

> zinc levels. But appropriate levels of histidine enhance zinc

levels.

>

> Histidine:

>

> Enhances wound healing,

> Is essential for tissue growth & repair.

> Is helpful with rheumatoid arthritis.

> Is important for red blood cell health. Deficiency will cause

> decreased

> hemoglobin & hematocrit, ultimately leading to anemia.

> Helps store glucose in your liver. "

> http://www.findhealer.com/glossary/L.php3

>

> As far as who does the testing....I have a " normal " ped for my kids

> from Florida and all I did was supply him with documentation from

> Dr. and also shared her background.

>

> Some of you may not be aware that is a respected researcher:

>

> R. , MD

> Attending Physician

> Director of Fellowship Research

> Pediatric Emergency Medicine

> Department of Emergency Medicine

> Children's Hospital & Research Center at Oakland

> 747 52nd Street

> Oakland, CA 94609

>

> " R. , MD, is a board certified pediatric emergency

> medicine physician and the director of fellowship research for the

> pediatric emergency medicine fellowship. Her research interests

> focus translational research in sickle cell disease, pulmonary

> hypertension and asthma. Dr. published the first

> investigation to evaluate a potential new therapy for the treatment

> of secondary pulmonary hypertension in sickle cell disease, a study

> that made the " Top ten publications list in pulmonary vascular

> disease " in Chest this year.

>

> Dr. has been a guest speaker nationally and internationally,

> with most recent presentations given at the European Respiratory

> Society Meeting in Copenhagen, Denmark in September 2005 ( " Pulmonary

> complications of hemoglobinopathies with a focus on sickle cell

> disease " ), and at the Nitric Oxide Gordon Research Conference in II

> Ciocco, Italy in May 2005 ( " Role of arginine depletion in asthma and

> pulmonary hypertension " ). Dr. is particularly interested in

> the role of low arginine and nitric oxide bioavailability in sickle

> cell disease as well as asthma, and novel treatments for pulmonary

> hypertension that target this mechanism. "

>

http://www.chori.org/Principal_Investigators/_/morris_ove

rview.html

>

> Tanner's pediatrician found it all very interesting and was open to

> writing the prescription for the blood testing even without knowing

> anything about what we are seeing. It would be the most cost

> effective, easy way to get the process started. For me, if my ped

> did " laugh " at me or found this whole thing to be just nuts after

> reading 's suggestions, results with her own child, and

> background...I'd switch pediatricians. Who needs an MD that's so

> in the box they may miss any other new information as well. And as

> far as other professionals doing the testing -if you have the money

> to go the DAN route to start and make sure it's someone with a

> medical background in pediatric neurodevelopmental medicine or at

> least pediatric medicine (you can be a Dan " doc " and not even be an

> MD FYI) that's always an option.

>

> As it's been posted prior we are charting unknown territory and as

> far as I'm concerned the main people that know the most about any of

> this are already part of this group...and leading the way on how

> vitamin E may contribute to the fish oil with knowledge about

> carnitine and more... is one member here we are all fortunate to

> have -Dr. !

>

> 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. - "

>

> You still may be confused -but you have to feel a bit more

> informed...right?

>

> =====

>

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We also feed Charlie 2.5 years, a diet much like yours. We do give him pizza

occassionally, about 2x per month. On valentines day, he had school food and

treats and pizza. Told me 1/2 hour after eating, that his tummy hurt. It is

nice that he can tell me these things. It is amazing to see the difference

in our kids with diet. I do the best I can, which is significantly better

than most people could or would. I am proud of that. Thanks for sharing.

Colleen

Mother of Charlie 2.5 years

[ ] WAS: yet another MR NOW: Food and behavior

story (sorry -- long!)

I have a recent personal experience to share regarding food and

behavior. has been doing so well in kindergarten and with

his NACD program, knows about 100 sight words, doesn't qualify for

speech or OT, and has had excellent behavior reports from school --

until this week. His teacher has said more than once that he is a

typical (boy) student, and that she would never have known about his

previous issues if I had not brought them to her attention. He even

got a special certificate for excellence the first week back from

Christmas break, because he transitioned back to school BETTER than

most!

Because we do not have lab tests confirming food allergies, my

husband has often thought that an infraction here and there is

harmless, especially since we use digestive enzymes. It is, however,

a slippery slope. First, it was dinner out for pizza once a month,

this month we went out every weekend. I also let him eat whatever he

wanted at the class Valentine's Day party. At the same time, Girl

Scout cookies and Valentine's Day candy entered the house in a big

way. (I am a Brownie leader.) Some have dairy, some don't, but all

have ARTIFICIALS. At first, we both thought we might be getting away

with something, then we received a note from his teacher. Here is an

excerpt:

" I am writing to let you know that over the past few weeks I have

noticed a significant change in 's behavior. Normally, I

would hardly ever need to speak to , but lately, I need to

speak with him up to 10 times a day. Some of the behavior I am

observing includes being very active, not sitting in his chair, and a

lack of following instructions. He truly seems unable to control

himself at times. I have observed kicking and jumping on

things (nap mats & backpacks.) "

As described by his teacher in this note and the follow-up

conversation, he has turned into ADHD kid practically overnight! In

addition to what she described, we have noticed the following at home:

--He is having increased difficulty paying attention during program

work. (e.g. After doing his new set of sight words for a whole

week, I checked to see how many he knew. Normally, he knows about 75%

+ after one week. He knew 0%!)

--His handwriting has been inconsistently terrible. Occasionally, he

can write a single word neatly, but mostly it's sloppy. Drawing

skills have been less detailed.

--Lots of crying over nothing.

--Uncooperative across the board.

--Spitting at his sister.

--Sour mood, even when he should be happy. (e.g. no veggies at

dinner, playing with favorite toys, I said " yes " to something like

watching TV)

--Softer BM's and also touching his private areas occasionally. (The

latter is totally new.)

During this time period, he has not been sick, changed sleep habits,

added or subtracted any supplements, or had any major life changes of

any kind.

Unfortunately, because of the nature of the infractions, the

detective work is a bit more complicated than normal. It could be

the dairy infraction (always a favorite target here), but I have two

other possibilities as well. His enzymes work on dairy, but they do

not work on artificals, so given the sharp turn in his behavior that

could be the real culprit. Other than the cookies, eats a

100% artifical-free diet with almost no MSG or HFCS (except the

occasional restaurant meal, which may be tainted with any of those

things.)

Another possibility is that it could be a yeast problem due to the

sugar in the cookies. While dairy can feed yeast, none of the

infractions were a full-blown milk item like straight milk or yogurt.

It could also be a little of all three.

Either way, my husband is now on board with the no dairy, no

artificials components, and we were already on a restaurant ban due

to the naughtiness on our last visit. (Tyler in particular.)

This is just one personal experience and not generally applicable.

However, it does point to the effect diet can have on behavior and

also to the difficult in nailing down the culprit, even when there

haven't been other major changes going on.

For anyone considering dietary changes to improve their children's

skills or behavior, eliminating artifical colors, flavors, sweetners,

and preservatives should absolutely be the first step. It is by far

the easiest dietary intervention, and you may see complete success

without eliminating any typically-allergenic foods. Check out the

Feingold program website for a lot more informationon this topic.

(We eliminated artificals back when he was in preschool, and it took

us far, but not the whole way. We still needed to get rid of the

dairy.) Eliminating MSG and HFCS (high fructose corn syrup) should

also be strongly considered.

in NJ

> > >

> > > Dawn,

> > >

> > > You have a very bright and wonderful child. I wish you great

> > success in

> > > finding whatever she needs to help the world see the smart and

> > ingenius

> > > little girl you have always known her to be.

> > >

> > > For what it is worth, a lot of my reading seems to point to

> > metabolic

> > > and allergy as a factor in spotty and inconsistent performance.

> If

> > you

> > > need help looking or the list of docs I am considering talking

to

> > in

> > > this area to rule things in or out for my guy please feel free

to

> > email

> > > me on or offlist.

> > >

> > > Best Wishes!

> > > Liz

> > >

> >

>

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Guest guest

Liz did not make that comment, and already provided sources

for it.

>

> For those that didn't do the blood testing yet through their

child's

> pediatrician -please do not supplement with carnotine at all until

> you do. If your child tests low in carnitine (not carnosine) then

he

> or she will have to be on a prescription dosage the rest of his or

> her life. This is not to scare anyone but important information.

> The following email will explain more.

>

> (And note to Liz -again please post credible links when you make

what

> called little comments like " carnotine feeds yeast " -if you

can

> find any.)

>

> ~~~~~~~~~~~~~~~important info on carnotine archive

>

> Re: Carnitine???

>

>

> Hi Trish, I hope I can help!

>

> Many people in this group (including me) supplemented their speech

> impaired child with either or both carn-aware ( http://www.carn-

aware.com )

> and/or carnosine. Carn-aware is a product name for a

> supplement that contains mainly carnosine with other ingredients -

> zinc and ('s gonna love this) " vitamin E " . Carn-aware did

> work for many of the children as far as us seeing some type of

> surge -and it was found successful in some clinical trials -here's

> is some history on it

> http://www.cherab.org/information/dietaryeffects/carnosine.html

> http://www.speechville.com/alternative-therapy/carnosine.html

>

> Some of us (including me) also used the carnosine because it's less

> expensive then the carn-aware because you can purchase it in pure

> powder form. I used to mix the carn-aware powder (from capsules)

and

> carnosine

> powder together too. Tanner's no longer on either carnaware or

> carnosine -but it did appear to be one of the things that helped

> along the way as you can read in the links above.

>

> For carnotine you 'do' want to get the testing done first to see if

> there is a deficiency because:

> From a direct quote from pediatrician/parent member here Dr.

> from an email to me (not to scare anyone...but)

>

> " 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. "

>

> To repeat the points raised -a carnitine deficiency is

> something you want to know about because it could be serious...and

> once you start supplementing it may be hard to know if there was a

> carnitine deficiency prior. And...for a less serious

> reason -too much carnitine causes one to smell " fishy " So I'd say

> no to just supplementing this one prior to blood work!

> The name may sound almost the

> same as carnosine -but they are different.

> " L-Carnitine

> L-Carnitine is an amino acid manufactured in your liver from the

> amino acids

> lysine & methionine. It is found in muscle & organ meats in the

human

> diet.

> Vegetarians are susceptible to deficiencies of all 3 of the above

> amino acids.

> L-Carnitine plays an important role in converting fat into energy.

It

> transfers

> fatty acids in the cell to the mitochondria (the energy engine)

which

> uses the

> fatty acids as fuel to generate energy. It assists in regulating

fat

> metabolism

> in your heart & skeletal muscles.

> A lack of carnitine can result in buildup of fat & add to problems

of

> obesity.

>

> The first sign of carnitine deficiency is hypoglycemia, which, if

> unchecked can

> lead to progressive muscular weakness, muscle disorders, heart

tissue

> damage,

> increased triglycerides, a breakdown of muscle tissue & irregular

> muscle

> function.

>

> L-Carnitine can be helpful for:

>

> Ischemic heart disease.

> Congestive heart failure.

> Increased triglycerides.

> Liver disease.

> Those on dialysis.

> Blood sugar stabilization.

> Increasing energy.

> Muscle weakness & disorders.

> Endurance training.

> Body fat reduction.

> Vegetarianism.

>

> L-Carnosine

> is a product of the amino acid histidine & has free radical

scavenging

> properties.

>

> L-Histidine

> L-histidine is an essential amino acid. Most of our histidine must

> come from our

> diets, but small amounts can be synthesized from glutamic acid &

> carnosine.

> Histidine has anti-inflammatory properties. It is the only amino

acid

> found to

> be consistently low in the blood of those with rheumatoid

arthritis.

> It is also

> low in the lubricating fluid in the joints. Whiskey significantly

> decreases

> histidine levels. Rheumatoid arthritis patients should avoid

alcohol.

>

> Histidine can convert to histamine, which is a major

neurotransmitter

> in your

> brain & throughout parts of your nervous system. However, histidine

> intake does

> not always increase brain histamine, Low brain histamine levels are

> associated

> with hyperactivity, mania, paranoia, hallucinations, & abnormal

> thoughts. Many

> brain functions of histamine are poorly understood but it is

thought

> to

> participate in the secretion of 2 hormones, (prolactin &

> antidiuretic). It is

> thought to aid temperature regulation & be involved in the control

of

> automatic

> nerve response in the central nervous system.

>

> Vitamin E deficiency will cause the depletion of histidine from

> muscles.

> Histidine is involved with the regulation of zinc levels in your

> body. If zinc

> is excessive it will lower histidine; if histidine is excessive it

> will decrease

> zinc levels. But appropriate levels of histidine enhance zinc

levels.

>

> Histidine:

>

> Enhances wound healing,

> Is essential for tissue growth & repair.

> Is helpful with rheumatoid arthritis.

> Is important for red blood cell health. Deficiency will cause

> decreased

> hemoglobin & hematocrit, ultimately leading to anemia.

> Helps store glucose in your liver. "

> http://www.findhealer.com/glossary/L.php3

>

> As far as who does the testing....I have a " normal " ped for my kids

> from Florida and all I did was supply him with documentation from

> Dr. and also shared her background.

>

> Some of you may not be aware that is a respected

researcher:

>

> R. , MD

> Attending Physician

> Director of Fellowship Research

> Pediatric Emergency Medicine

> Department of Emergency Medicine

> Children's Hospital & Research Center at Oakland

> 747 52nd Street

> Oakland, CA 94609

>

> " R. , MD, is a board certified pediatric emergency

> medicine physician and the director of fellowship research for the

> pediatric emergency medicine fellowship. Her research interests

> focus translational research in sickle cell disease, pulmonary

> hypertension and asthma. Dr. published the first

> investigation to evaluate a potential new therapy for the treatment

> of secondary pulmonary hypertension in sickle cell disease, a study

> that made the " Top ten publications list in pulmonary vascular

> disease " in Chest this year.

>

> Dr. has been a guest speaker nationally and internationally,

> with most recent presentations given at the European Respiratory

> Society Meeting in Copenhagen, Denmark in September 2005

( " Pulmonary

> complications of hemoglobinopathies with a focus on sickle cell

> disease " ), and at the Nitric Oxide Gordon Research Conference in II

> Ciocco, Italy in May 2005 ( " Role of arginine depletion in asthma

and

> pulmonary hypertension " ). Dr. is particularly interested in

> the role of low arginine and nitric oxide bioavailability in sickle

> cell disease as well as asthma, and novel treatments for pulmonary

> hypertension that target this mechanism. "

>

http://www.chori.org/Principal_Investigators/_/morris_ov

erview.html

>

> Tanner's pediatrician found it all very interesting and was open to

> writing the prescription for the blood testing even without knowing

> anything about what we are seeing. It would be the most cost

> effective, easy way to get the process started. For me, if my ped

> did " laugh " at me or found this whole thing to be just nuts after

> reading 's suggestions, results with her own child, and

> background...I'd switch pediatricians. Who needs an MD that's so

> in the box they may miss any other new information as well. And as

> far as other professionals doing the testing -if you have the money

> to go the DAN route to start and make sure it's someone with a

> medical background in pediatric neurodevelopmental medicine or at

> least pediatric medicine (you can be a Dan " doc " and not even be an

> MD FYI) that's always an option.

>

> As it's been posted prior we are charting unknown territory and as

> far as I'm concerned the main people that know the most about any

of

> this are already part of this group...and leading the way on how

> vitamin E may contribute to the fish oil with knowledge about

> carnitine and more... is one member here we are all fortunate to

> have -Dr. !

>

> 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. - "

>

> You still may be confused -but you have to feel a bit more

> informed...right?

>

> =====

>

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Guest guest

The Bock book recommends the one you are using now. Is it still over-

the-counter or does it require a prescription? What dose do you

use? And L-carnitine helped nasal congestion? That certainly can't

be related to tone -- unless he has a very muscular nose. Any theory

as to why?

in NJ

>

> L-carnitine helped my son's nasal congestion - I swithced to n-

acetyl-

> carnitine and we some improvements in his language.

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Guest guest

Give Liz a break -- she didn't post that, I did. Dana of

www.danasview.net recently mentioned this on the Enzymes and Autism

board. She did not cite a study, as she is usually speaking

from her vast personal experience, but when I find an additional,

more scientific source, I will post. That is the first and only time

I have heard that.

in NJ

>

> For those that didn't do the blood testing yet through their child's

> pediatrician -please do not supplement with carnotine at all until

> you do. If your child tests low in carnitine (not carnosine) then

he

> or she will have to be on a prescription dosage the rest of his or

> her life. This is not to scare anyone but important information.

> The following email will explain more.

>

> (And note to Liz -again please post credible links when you make

what

> called little comments like " carnotine feeds yeast " -if you

can

> find any.)

>

> ~~~~~~~~~~~~~~~important info on carnotine archive

>

> Re: Carnitine???

>

>

> Hi Trish, I hope I can help!

>

> Many people in this group (including me) supplemented their speech

> impaired child with either or both carn-aware ( http://www.carn-

aware.com )

> and/or carnosine. Carn-aware is a product name for a

> supplement that contains mainly carnosine with other ingredients -

> zinc and ('s gonna love this) " vitamin E " . Carn-aware did

> work for many of the children as far as us seeing some type of

> surge -and it was found successful in some clinical trials -here's

> is some history on it

> http://www.cherab.org/information/dietaryeffects/carnosine.html

> http://www.speechville.com/alternative-therapy/carnosine.html

>

> Some of us (including me) also used the carnosine because it's less

> expensive then the carn-aware because you can purchase it in pure

> powder form. I used to mix the carn-aware powder (from capsules) and

> carnosine

> powder together too. Tanner's no longer on either carnaware or

> carnosine -but it did appear to be one of the things that helped

> along the way as you can read in the links above.

>

> For carnotine you 'do' want to get the testing done first to see if

> there is a deficiency because:

> From a direct quote from pediatrician/parent member here Dr.

> from an email to me (not to scare anyone...but)

>

> " 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. "

>

> To repeat the points raised -a carnitine deficiency is

> something you want to know about because it could be serious...and

> once you start supplementing it may be hard to know if there was a

> carnitine deficiency prior. And...for a less serious

> reason -too much carnitine causes one to smell " fishy " So I'd say

> no to just supplementing this one prior to blood work!

> The name may sound almost the

> same as carnosine -but they are different.

> " L-Carnitine

> L-Carnitine is an amino acid manufactured in your liver from the

> amino acids

> lysine & methionine. It is found in muscle & organ meats in the

human

> diet.

> Vegetarians are susceptible to deficiencies of all 3 of the above

> amino acids.

> L-Carnitine plays an important role in converting fat into energy.

It

> transfers

> fatty acids in the cell to the mitochondria (the energy engine)

which

> uses the

> fatty acids as fuel to generate energy. It assists in regulating fat

> metabolism

> in your heart & skeletal muscles.

> A lack of carnitine can result in buildup of fat & add to problems

of

> obesity.

>

> The first sign of carnitine deficiency is hypoglycemia, which, if

> unchecked can

> lead to progressive muscular weakness, muscle disorders, heart

tissue

> damage,

> increased triglycerides, a breakdown of muscle tissue & irregular

> muscle

> function.

>

> L-Carnitine can be helpful for:

>

> Ischemic heart disease.

> Congestive heart failure.

> Increased triglycerides.

> Liver disease.

> Those on dialysis.

> Blood sugar stabilization.

> Increasing energy.

> Muscle weakness & disorders.

> Endurance training.

> Body fat reduction.

> Vegetarianism.

>

> L-Carnosine

> is a product of the amino acid histidine & has free radical

scavenging

> properties.

>

> L-Histidine

> L-histidine is an essential amino acid. Most of our histidine must

> come from our

> diets, but small amounts can be synthesized from glutamic acid &

> carnosine.

> Histidine has anti-inflammatory properties. It is the only amino

acid

> found to

> be consistently low in the blood of those with rheumatoid arthritis.

> It is also

> low in the lubricating fluid in the joints. Whiskey significantly

> decreases

> histidine levels. Rheumatoid arthritis patients should avoid

alcohol.

>

> Histidine can convert to histamine, which is a major

neurotransmitter

> in your

> brain & throughout parts of your nervous system. However, histidine

> intake does

> not always increase brain histamine, Low brain histamine levels are

> associated

> with hyperactivity, mania, paranoia, hallucinations, & abnormal

> thoughts. Many

> brain functions of histamine are poorly understood but it is thought

> to

> participate in the secretion of 2 hormones, (prolactin &

> antidiuretic). It is

> thought to aid temperature regulation & be involved in the control

of

> automatic

> nerve response in the central nervous system.

>

> Vitamin E deficiency will cause the depletion of histidine from

> muscles.

> Histidine is involved with the regulation of zinc levels in your

> body. If zinc

> is excessive it will lower histidine; if histidine is excessive it

> will decrease

> zinc levels. But appropriate levels of histidine enhance zinc

levels.

>

> Histidine:

>

> Enhances wound healing,

> Is essential for tissue growth & repair.

> Is helpful with rheumatoid arthritis.

> Is important for red blood cell health. Deficiency will cause

> decreased

> hemoglobin & hematocrit, ultimately leading to anemia.

> Helps store glucose in your liver. "

> http://www.findhealer.com/glossary/L.php3

>

> As far as who does the testing....I have a " normal " ped for my kids

> from Florida and all I did was supply him with documentation from

> Dr. and also shared her background.

>

> Some of you may not be aware that is a respected researcher:

>

> R. , MD

> Attending Physician

> Director of Fellowship Research

> Pediatric Emergency Medicine

> Department of Emergency Medicine

> Children's Hospital & Research Center at Oakland

> 747 52nd Street

> Oakland, CA 94609

>

> " R. , MD, is a board certified pediatric emergency

> medicine physician and the director of fellowship research for the

> pediatric emergency medicine fellowship. Her research interests

> focus translational research in sickle cell disease, pulmonary

> hypertension and asthma. Dr. published the first

> investigation to evaluate a potential new therapy for the treatment

> of secondary pulmonary hypertension in sickle cell disease, a study

> that made the " Top ten publications list in pulmonary vascular

> disease " in Chest this year.

>

> Dr. has been a guest speaker nationally and internationally,

> with most recent presentations given at the European Respiratory

> Society Meeting in Copenhagen, Denmark in September 2005 ( " Pulmonary

> complications of hemoglobinopathies with a focus on sickle cell

> disease " ), and at the Nitric Oxide Gordon Research Conference in II

> Ciocco, Italy in May 2005 ( " Role of arginine depletion in asthma and

> pulmonary hypertension " ). Dr. is particularly interested in

> the role of low arginine and nitric oxide bioavailability in sickle

> cell disease as well as asthma, and novel treatments for pulmonary

> hypertension that target this mechanism. "

>

http://www.chori.org/Principal_Investigators/_/morris_ove

rview.html

>

> Tanner's pediatrician found it all very interesting and was open to

> writing the prescription for the blood testing even without knowing

> anything about what we are seeing. It would be the most cost

> effective, easy way to get the process started. For me, if my ped

> did " laugh " at me or found this whole thing to be just nuts after

> reading 's suggestions, results with her own child, and

> background...I'd switch pediatricians. Who needs an MD that's so

> in the box they may miss any other new information as well. And as

> far as other professionals doing the testing -if you have the money

> to go the DAN route to start and make sure it's someone with a

> medical background in pediatric neurodevelopmental medicine or at

> least pediatric medicine (you can be a Dan " doc " and not even be an

> MD FYI) that's always an option.

>

> As it's been posted prior we are charting unknown territory and as

> far as I'm concerned the main people that know the most about any of

> this are already part of this group...and leading the way on how

> vitamin E may contribute to the fish oil with knowledge about

> carnitine and more... is one member here we are all fortunate to

> have -Dr. !

>

> 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. - "

>

> You still may be confused -but you have to feel a bit more

> informed...right?

>

> =====

>

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I believe my son has some sort of mitochondrial dysfuction. It has

something to do with not metabolizing fats properly. Some of the more

obscure symptoms people have described are constant nasal congestion

and very waxy ears (his peds always commented in the amount of wax in

his ears). My son was very low normal for carnitine (only 2 points

above below normal range) when we got the blood test done. Of course,

the ped. said don't worry - if it's in the normal range he's ok. I

really doubted this and decided to use OTC after reading alot of DAN

literature. It appears to be a very common problem in ASD. After

combining into a " mito cocktail " , I noticed a definite improvement in

the congestion.

I have Dr. Bocks book and noticed that he recommended the N-acetyl-

carnitine. I don't have the book right now so I can't quote exactly

why, but it has something to do with mito problems.

I belong to the group and Dana (very smart

woman) mentioned these same things in one of her sons and that she

addressed it by using a " mito cocktail " . (The cocktail is pretty much

what has talked about in her posts on this group - you need

more than just the l-carnitine). I don't think she ever mentioned that

her son had congestion or waxy ears though.

This is why I read all of the posts on all of the boards that I belong

to. I have picked up little things that have helped my son that most

people are not talking about. All it takes is one person that has a

similar experience and it can help your child immensely.

> >

> > L-carnitine helped my son's nasal congestion - I swithced to n-

> acetyl-

> > carnitine and we some improvements in his language.

>

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Hi Janice,

I know there are a higher than usual number of children in this group

that are testing low in carnotine -which is typically not common.

This is yet another reason why whatever is going on with our children

appears to be more of a syndrome -not just a speech impairment. The

carnotine issue is what led me to take Tanner to test him for that

and everything else recommended. I just shared her email

with Tanner's ped.

The reasons for not supplementing with carnotine prior to the testing

is not fear of toxins -it's not skewing the test results because

carnotine deficiency can be serious. Over time a carnotine

deficiency can affect the muscles around the heart. Below I have an

archive clip on this and include information on carnosine because

even though it's also an amino acid and almost sounds the same -carnosine

you can supplement without even getting tested to use it. If anyone

needs the types of blood tests to share with the pediatrician let me

know and I'll archvie that too. I know for us- and we did the

testing about a year ago? It was covered by insurance...but have to

tell you that it was a huge list of tests which took around 12 vials

of blood or something crazy like that!

It's good to know that your child is deficient because then you can

address this now. As says below -it's not the type of change

you would even notice ...but it's one that needs to be addressed over

time. You mean your pediatrician didn't say Mark needed to be on the

prescription carnotine for life? Maybe I got that wrong but that was

my impression.

~~~~~~~~~~~

Many people in this group (including me) supplemented their speech

impaired child with either or both carn-aware ( http://www.carn-aware.com )

and/or carnosine. Carn-aware is a product name for a

supplement that contains mainly carnosine with other ingredients -

zinc and ('s gonna love this) " vitamin E " . Carn-aware did

work for many of the children as far as us seeing some type of

surge -and it was found successful in some clinical trials -here's

is some history on it

http://www.cherab.org/information/dietaryeffects/carnosine.html

http://www.speechville.com/alternative-therapy/carnosine.html

Some of us (including me) also used the carnosine because it's less

expensive then the carn-aware because you can purchase it in pure

powder form. I used to mix the carn-aware powder (from capsules) and

carnosine

powder together too. Tanner's no longer on either carnaware or

carnosine -but it did appear to be one of the things that helped

along the way as you can read in the links above.

For carnotine you 'do' want to get the testing done first to see if

there is a deficiency because:

From a direct quote from pediatrician/parent member here Dr.

from an email to me (not to scare anyone...but)

" 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. "

=====

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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

>

> Hi Janice,

>

> I know there are a higher than usual number of children in this

group

> that are testing low in carnotine -which is typically not common.

> This is yet another reason why whatever is going on with our

children

> appears to be more of a syndrome -not just a speech impairment. The

> carnotine issue is what led me to take Tanner to test him for that

> and everything else recommended. I just shared her email

> with Tanner's ped.

>

> The reasons for not supplementing with carnotine prior to the

testing

> is not fear of toxins -it's not skewing the test results because

> carnotine deficiency can be serious. Over time a carnotine

> deficiency can affect the muscles around the heart. Below I have an

> archive clip on this and include information on carnosine because

> even though it's also an amino acid and almost sounds the same -

carnosine

> you can supplement without even getting tested to use it. If anyone

> needs the types of blood tests to share with the pediatrician let me

> know and I'll archvie that too. I know for us- and we did the

> testing about a year ago? It was covered by insurance...but have to

> tell you that it was a huge list of tests which took around 12 vials

> of blood or something crazy like that!

>

> It's good to know that your child is deficient because then you can

> address this now. As says below -it's not the type of

change

> you would even notice ...but it's one that needs to be addressed

over

> time. You mean your pediatrician didn't say Mark needed to be on

the

> prescription carnotine for life? Maybe I got that wrong but that

was

> my impression.

>

> ~~~~~~~~~~~

>

> Many people in this group (including me) supplemented their speech

> impaired child with either or both carn-aware ( http://www.carn-

aware.com )

> and/or carnosine. Carn-aware is a product name for a

> supplement that contains mainly carnosine with other ingredients -

> zinc and ('s gonna love this) " vitamin E " . Carn-aware did

> work for many of the children as far as us seeing some type of

> surge -and it was found successful in some clinical trials -here's

> is some history on it

> http://www.cherab.org/information/dietaryeffects/carnosine.html

> http://www.speechville.com/alternative-therapy/carnosine.html

>

> Some of us (including me) also used the carnosine because it's less

> expensive then the carn-aware because you can purchase it in pure

> powder form. I used to mix the carn-aware powder (from capsules) and

> carnosine

> powder together too. Tanner's no longer on either carnaware or

> carnosine -but it did appear to be one of the things that helped

> along the way as you can read in the links above.

>

> For carnotine you 'do' want to get the testing done first to see if

> there is a deficiency because:

> From a direct quote from pediatrician/parent member here Dr.

> from an email to me (not to scare anyone...but)

>

> " 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. "

>

> =====

>

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,

My son tested low in carnitine and we have him on it. My doctor has not

mentioned that he will need to be on it for the rest of his life. But we are

quite early in our work with all of Mark's issues and intend to retest all of

his levels in the springtime to see where his metabolic profiles are at. Is

this for certain that he will need to be on it for the rest of his life? Where

can I read more about this information? This is the first that I have heard of

this but.... I do understand that Mito cocktails and autoimmune issues are a

life thing? I cringe since I am still waiting for test results to come back. I

simply feel like my son cannot handle one more piece of bad news.

I have never heard of any toxicity risk associated with supplementing

L-carnitine or acetyl-l-carnitine. I would love to have more information about

this if you have it handy. Research and reading is something I like to do since

it enables me to understand which systems are breaking down in the body. I

think that indicated that it would be good to get a baseline of

Carnitine levels prior to supplementing but if you are already

supplementing..... it is a good idea to have baselines, sure, but you can

certainly supplement carnitine very safely (probably a lot safer then vitamin

E). This is my understanding but perhaps I am wrong and there is research to

suggest that Carnitine must be under doctors supervision. I have yet to

encounter this however. It is good to have all supplementation be conducted

under the watchful eyes of a doctor but for many, this is not feasible.

As my son is low in carnitine and his body is not producing much of it, we are

definitely trying very hard to get his systems up and running efficiently so

that he can indeed produce it on his own. I was under the impression that the

reason his essential fatty acid profile came back so low was because he is not

metabolizing fats properly.... and the low carnitine could be a cause of this?

Still learning on this one but again, I was under the impression the L-carnitine

should be supplemented with fish oils and the EFA's in order to promote

absorption. Perhaps, again, this is an individual issue. I suspect that it

could be a common issue though especially amongst our low-toned kids. Could be

that a lot of them really need the L-carnitine or the Acetyl-l-Carnitine to

properly absorb the EFA's and get that low tone to diminish. ly, I have

found that really the best way to improve low tone in the body is with a

medicine ball or weights and do the lifting! We have been doing this for some

time now. But, I am aware that L-carnitine does promote muscle tone.

I certainly hope that my boy does not encounter heart issues down the road as it

mentioned in the linked message below. It is hard to imagine him obese since he

barely carries any weight on him at all! Of course, we will never know what

puberty brings.

My son definitely symbolizes the metabolic train wreck so often talked about in

these circles!

Janice

>

> For those that didn't do the blood testing yet through their child's

> pediatrician -please do not supplement with carnotine at all until

> you do. If your child tests low in carnitine (not carnosine) then

he

> or she will have to be on a prescription dosage the rest of his or

> her life. This is not to scare anyone but important information.

> The following email will explain more.

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Hey Janice:

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

Meta-mito-autism/

This group is good and full of information. It is for autism though,

but most on the group are very helpful for answering questions. The

archives are full of good info too. I am a member and as long as I

stay true to the guidelines they don't have a problem with it. They

can also point you to a good doctor.

Hope this helps...I am also sending something to your private email

for you to look over.

Tina

> >

> > Hi Janice,

> >

> > I know there are a higher than usual number of children in this

> group

> > that are testing low in carnotine -which is typically not

common.

> > This is yet another reason why whatever is going on with our

> children

> > appears to be more of a syndrome -not just a speech impairment.

The

> > carnotine issue is what led me to take Tanner to test him for

that

> > and everything else recommended. I just shared her email

> > with Tanner's ped.

> >

> > The reasons for not supplementing with carnotine prior to the

> testing

> > is not fear of toxins -it's not skewing the test results because

> > carnotine deficiency can be serious. Over time a carnotine

> > deficiency can affect the muscles around the heart. Below I

have an

> > archive clip on this and include information on carnosine

because

> > even though it's also an amino acid and almost sounds the same -

> carnosine

> > you can supplement without even getting tested to use it. If

anyone

> > needs the types of blood tests to share with the pediatrician

let me

> > know and I'll archvie that too. I know for us- and we did the

> > testing about a year ago? It was covered by insurance...but

have to

> > tell you that it was a huge list of tests which took around 12

vials

> > of blood or something crazy like that!

> >

> > It's good to know that your child is deficient because then you

can

> > address this now. As says below -it's not the type of

> change

> > you would even notice ...but it's one that needs to be

addressed

> over

> > time. You mean your pediatrician didn't say Mark needed to be

on

> the

> > prescription carnotine for life? Maybe I got that wrong but

that

> was

> > my impression.

> >

> > ~~~~~~~~~~~

> >

> > Many people in this group (including me) supplemented their

speech

> > impaired child with either or both carn-aware ( http://www.carn-

> aware.com )

> > and/or carnosine. Carn-aware is a product name for a

> > supplement that contains mainly carnosine with other

ingredients -

> > zinc and ('s gonna love this) " vitamin E " . Carn-aware did

> > work for many of the children as far as us seeing some type of

> > surge -and it was found successful in some clinical trials -

here's

> > is some history on it

> > http://www.cherab.org/information/dietaryeffects/carnosine.html

> > http://www.speechville.com/alternative-therapy/carnosine.html

> >

> > Some of us (including me) also used the carnosine because it's

less

> > expensive then the carn-aware because you can purchase it in

pure

> > powder form. I used to mix the carn-aware powder (from

capsules) and

> > carnosine

> > powder together too. Tanner's no longer on either carnaware or

> > carnosine -but it did appear to be one of the things that helped

> > along the way as you can read in the links above.

> >

> > For carnotine you 'do' want to get the testing done first to

see if

> > there is a deficiency because:

> > From a direct quote from pediatrician/parent member here Dr.

> > from an email to me (not to scare anyone...but)

> >

> > " 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. "

> >

> > =====

> >

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Janice - Tina - my son also has all the labs to support mirochondrial

dysfuntion - we're doing the supplement " cocktail " . I know a muscle

biopsy will offer difinitive proof - but i'm not going there. There's

no need really - this is absolutely indicitive of heavy metal

toxicity. He needs every individual item in " the cocktail " . If the

treatment required a pharmaceutical - you better believe i'd " go there "

but, we're just talking vitamin supplements he's deficient in.

Sooooo.... is dyspraxia really rooted in mitochondrial dysfunction

which is rooted in heavy metal toxicity??????? hmmmmmmmmmmm

YES!!!!!!! in my opinion based on my experience with my kid!

Dr. Rossignal and Dr. Stoller both have done recent studies on

Mitochondrial dysfuntion and heavy metal toxicity .. google it.

>

> Tina,

>

> This is a REALLY good article! Thank you. Question.... If you have

low carnitine and low COQ10, then do you need a muscle biopsy (which is

really painful I hear) to confirm mitochondrial disease? Or is this a

separate issue?

>

> Anybody know the answer to this?

>

> Thanks,

>

> Janice

>

>

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Janice,

Which doctor suggested the carnitine? If it was your environmental

doctor, perhaps he meant " low average " ? Testable, low levels of

carnitine are not common.

Also, Ellen at NACD said that a lot of their kids supplement with

carnitine because on paper it looks like it should really help. Yet,

they haven't seen any big " wow's " with it. That has been our

experience, too. Have you noticed a good effect from it?

in NJ

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Tina,

This is a REALLY good article! Thank you. Question.... If you have low

carnitine and low COQ10, then do you need a muscle biopsy (which is really

painful I hear) to confirm mitochondrial disease? Or is this a separate issue?

Anybody know the answer to this?

Thanks,

Janice

[sPAM]Re:[ ] Re: WAS: yet another MR NOW: Food and

behavior story (sorry -- long!)

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

>

> Hi Janice,

>

> I know there are a higher than usual number of children in this

group

> that are testing low in carnotine -which is typically not common.

> This is yet another reason why whatever is going on with our

children

> appears to be more of a syndrome -not just a speech impairment. The

> carnotine issue is what led me to take Tanner to test him for that

> and everything else recommended. I just shared her email

> with Tanner's ped.

>

> The reasons for not supplementing with carnotine prior to the

testing

> is not fear of toxins -it's not skewing the test results because

> carnotine deficiency can be serious. Over time a carnotine

> deficiency can affect the muscles around the heart. Below I have an

> archive clip on this and include information on carnosine because

> even though it's also an amino acid and almost sounds the same -

carnosine

> you can supplement without even getting tested to use it. If anyone

> needs the types of blood tests to share with the pediatrician let me

> know and I'll archvie that too. I know for us- and we did the

> testing about a year ago? It was covered by insurance...but have to

> tell you that it was a huge list of tests which took around 12 vials

> of blood or something crazy like that!

>

> It's good to know that your child is deficient because then you can

> address this now. As says below -it's not the type of

change

> you would even notice ...but it's one that needs to be addressed

over

> time. You mean your pediatrician didn't say Mark needed to be on

the

> prescription carnotine for life? Maybe I got that wrong but that

was

> my impression.

>

> ~~~~~~~~~~~

>

> Many people in this group (including me) supplemented their speech

> impaired child with either or both carn-aware ( http://www.carn-

aware.com )

> and/or carnosine. Carn-aware is a product name for a

> supplement that contains mainly carnosine with other ingredients -

> zinc and ('s gonna love this) " vitamin E " . Carn-aware did

> work for many of the children as far as us seeing some type of

> surge -and it was found successful in some clinical trials -here's

> is some history on it

> http://www.cherab.org/information/dietaryeffects/carnosine.html

> http://www.speechville.com/alternative-therapy/carnosine.html

>

> Some of us (including me) also used the carnosine because it's less

> expensive then the carn-aware because you can purchase it in pure

> powder form. I used to mix the carn-aware powder (from capsules) and

> carnosine

> powder together too. Tanner's no longer on either carnaware or

> carnosine -but it did appear to be one of the things that helped

> along the way as you can read in the links above.

>

> For carnotine you 'do' want to get the testing done first to see if

> there is a deficiency because:

> From a direct quote from pediatrician/parent member here Dr.

> from an email to me (not to scare anyone...but)

>

> " 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. "

>

> =====

>

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Mitochondrial Disease

What are mitochondria?

A mitochondrion (singular of mitochondria) is part of every cell in

the body that contains genetic material. Mitochondria are responsible

for processing oxygen and converting substances from the foods we eat

into energy for essential cell functions. Mitochondria produce energy

in the form of adenosine triphosphate (ATP), which is then

transported to the cytoplasm of a cell for use in numerous cell

functions.

What are mitochondrial and metabolic diseases?

Mitochondrial medicine is a new and rapidly developing medical

subspecialty. Many specialists are involved in researching

mitochondrial diseases, including doctors specializing in metabolic

diseases, cell biologists, molecular geneticists, neurologists,

biochemists, pathologists, immunologists, and embryologists. Much of

what we know about these diseases has been discovered since 1940. In

1959, the first patient was diagnosed with a mitochondrial disorder.

In 1963, researchers discovered that mitochondria have their own DNA

or " blueprint " (mtDNA), which is different than the nuclear DNA

(nDNA) found in the cells' nucleus.

Mitochondrial and metabolic medical conditions are now referred to as

mitochondrial cytopathies. Mitochondrial cytopathies actually include

more than 40 different identified diseases that have different

genetic features. The common factor among these diseases is that the

mitochondria are unable to completely burn food and oxygen in order

to generate energy.

The process of converting food and oxygen (fuel) into energy requires

hundreds of chemical reactions, and each chemical reaction must run

almost perfectly in order to have a continuous supply of energy. When

one or more components of these chemical reactions does not run

perfectly, there is an energy crisis, and the cells cannot function

normally. As a result, the incompletely burned food might accumulate

as poison inside the body.

This poison can stop other chemical reactions that are important for

the cells to survive, making the energy crisis even worse. In

addition, these poisons can act as free radicals (reactive substances

that readily form harmful compounds with other molecules) that can

damage the mitochondria over time, causing damage that cannot be

reversed. Unlike nuclear DNA, mitochondrial DNA has very limited

repair abilities and almost no protective capacity to shield the

mitochondria from free radical damage.

What are the symptoms of mitochondrial diseases?

The types of mitochondrial diseases are categorized according to the

organ systems affected and symptoms present. Mitochondrial diseases

might affect the cells of the brain, nerves (including the nerves to

the stomach and intestines), muscles, kidneys, heart, liver, eyes,

ears, or pancreas. In some patients, only one organ is affected,

while in other patients all the organs are involved. Depending on how

severe the mitochondrial disorder is, the illness can range in

severity from mild to fatal.

Depending on which cells of the body are affected, symptoms might

include:

Poor growth

Loss of muscle coordination, muscle weakness

Visual and/or hearing problems

Developmental delays, learning disabilities

Mental retardation

Heart, liver, or kidney disease

Gastrointestinal disorders, severe constipation

Respiratory disorders

Diabetes

Increased risk of infection

Neurological problems, seizures

Thyroid dysfunction

Dementia (mental disorder characterized by confusion, disorientation,

and memory loss)

How common are mitochondrial diseases?

About one in 4,000 children in the United States will develop

mitochondrial disease by the age of 10 years. One thousand to 4,000

children per year in the United Sates are born with a type of

mitochondrial disease.

In adults, many diseases of aging have been found to have defects of

mitochondrial function. These include, but are not limited to, type 2

diabetes, Parkinson's disease, atherosclerotic heart disease, stroke,

Alzheimer's disease, and cancer. In addition, many medicines can

injure the mitochondria.

What causes mitochondrial disease?

For many patients, mitochondrial disease is an inherited condition

that runs in families (genetic). An uncertain percentage of patients

acquire symptoms due to other factors, including mitochondrial toxins.

It is important to determine which type of mitochondrial disease

inheritance is present, in order to predict the risk of recurrence

for future children.

The types of mitochondrial disease inheritance include:

nDNA (DNA contained in the nucleus of the cell) inheritance. Also

called autosomal inheritance.

-- If this gene trait is recessive (one gene from each parent), often

no other family members appear to be affected. There is a 25 percent

chance of the trait occurring in other siblings.

-- If this gene trait is dominant (a gene from either parent), the

disease often occurs in other family members. There is a 50 percent

chance of the trait occurring in other siblings.

mtDNA (DNA contained in the mitochondria) inheritance.

-- There is a 100 percent chance of the trait occurring in other

siblings, since all mitochondria are inherited from the mother,

although symptoms might be either more or less severe.

Combination of mtDNA and nDNA defects:

-- Relationship between nDNA and mtDNA and their correlation in

mitochondrial formation is unknown

Random occurrences

Diseases specifically from deletions of large parts of the

mitochondrial DNA molecule are usually sporadic without affecting

other family member

-- Medicines or other toxic substances can trigger mitochondrial

disease

How are mitochondrial diseases diagnosed?

Diagnosis of mitochondrial disease can be invasive, expensive, time-

consuming, and labor-intensive. Therefore, evaluation is not taken

lightly. Doctors experienced in diagnosing and treating these

diseases will take either a step-wise approach to diagnosis or, in

some centers, the evaluation takes place over a few days. The

evaluation includes a combination of clinical observations and

laboratory tests.

Under ideal circumstances, the evaluation will produce an answer.

However, even after a complete evaluation, the doctor might not be

able to confirm a specific diagnosis or put a name to the disorder.

In many cases, however, the physician will be able to identify which

patients do and don't have metabolic diseases.

Mitochondrial disease is diagnosed by:

Evaluating the patient's family history

Performing a complete physical examination

Performing a neurological examination

Performing a metabolic examination that includes blood, urine, and

optional cerebral spinal fluid tests

Performing other tests, depending on the patient's specific condition

and needs. These tests might include:

-- Magnetic resonance imaging (MRI) or scan (MRS) if neurological

symptoms are present

-- Retinal exam or electroretinogram if vision symptoms are present

-- Electrocardiogram (EKG) or echocardiogram if heart disease

symptoms are present

-- Audiogram or BAEP if hearing symptoms are present

-- Blood test to detect thyroid dysfunction if thyroid problems are

present

-- Blood test to perform genetic DNA testing

More invasive tests, such as a skin or muscle biopsy, might be

performed as needed and recommended by your doctor.

How are mitochondrial diseases treated?

There are no cures for mitochondrial diseases, but treatment can help

reduce symptoms, or delay or prevent the progression of the disease.

Treatment is individualized for each patient, as doctors specializing

in metabolic diseases have found that every child and adult

is " biochemically different. " That means that no two people will

respond to a particular treatment in a specific way, even if they

have the same disease.

Certain vitamin and enzyme therapies, along with occupational and

physical therapy, might be helpful for some patients.

Vitamins and supplements prescribed might include:

- Coenzyme Q10

- B complex vitamins: thiamine (B1), riboflavin (B2), niacin (B3),

B6, folate, B12, biotin, pantothenic acid

- Vitamin E, lipoic acid, selinium, and other antioxidants

- L-carnitine (Carnitor®)

- Intercurrent illness supplement: vitamin C, biotin

Diet therapy, as prescribed by your doctor along with a registered

dietitian, might be recommended.

Antioxidant treatments as protective substances are currently being

investigated as another potential treatment method.

Important: Specific treatments should always be guided by a metabolic

specialist. Patients should not take any of these supplements or try

any of the treatments unless prescribed by a doctor. Taking

inappropriate supplements or treatments might lead to delays or

failure in establishing an accurate diagnosis.

What is the prognosis or outlook?

Once a patient is diagnosed with a specific mitochondrial disease,

the patient's medical problems have already been identified or can be

identified with proper testing so treatment can be initiated to

relieve symptoms and delay the progression of the disease.

There is no way to predict the course of mitochondrial diseases. They

might progress quickly or slowly, even over decades. The disease

might also appear stable for years.

For parents considering having other children, genetic counseling is

available. Although complex, prenatal testing is only available for a

few types of mitochondrial disorders. Please discuss your concerns

with your doctor.

©Copyright 1995-2007 Cleveland Clinic. All rights reserved.

Can't find the health information you're looking for? Ask a Health

Educator, Live!

Click here to go to the Medical Genetics Program Web site.

Know someone who could use this information?....send them this link.

--------------------------------

What causes mitochondrial disease?

For many patients, mitochondrial disease is an inherited condition

that runs in families (genetic). An uncertain percentage of patients

acquire symptoms due to other factors, including mitochondrial toxins.

It is important to determine which type of mitochondrial disease

inheritance is present, in order to predict the risk of recurrence

for future children.

---------------------------------

There is a difference of genetics and acquired mitochondrial

dysfunction due to toxins. Because I am not a doctor, I am not going

to pretend to know all there is to know about mito disorders. I do

know that many people are faced with the diagnosis of suspected mito

disorder. It is very complex and one should really visit a doctor

that specializes in metabolic disorders if this is a possibility for

their child.

Tina

> >

> > Tina,

> >

> > This is a REALLY good article! Thank you. Question.... If you

have

> low carnitine and low COQ10, then do you need a muscle biopsy

(which is

> really painful I hear) to confirm mitochondrial disease? Or is

this a

> separate issue?

> >

> > Anybody know the answer to this?

> >

> > Thanks,

> >

> > Janice

> >

> >

>

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Feeling way better about my genetics appt. No way we have all this.

> > >

> > > Tina,

> > >

> > > This is a REALLY good article! Thank you. Question.... If you

> have

> > low carnitine and low COQ10, then do you need a muscle biopsy

> (which is

> > really painful I hear) to confirm mitochondrial disease? Or is

> this a

> > separate issue?

> > >

> > > Anybody know the answer to this?

> > >

> > > Thanks,

> > >

> > > Janice

> > >

> > >

> >

>

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So you think that is it? Based on nothing but lots of reading I have

often wondered...just wondered...if the known mito disorders are

exactly as they are defined and if some of the kids labeled " unknown

mito " are metal kids.

I'll read your reference. I am curious if the metal stuff they

reference relates to known or unknown mito stuff.

> >

> > Tina,

> >

> > This is a REALLY good article! Thank you. Question.... If you

have

> low carnitine and low COQ10, then do you need a muscle biopsy

(which is

> really painful I hear) to confirm mitochondrial disease? Or is

this a

> separate issue?

> >

> > Anybody know the answer to this?

> >

> > Thanks,

> >

> > Janice

> >

> >

>

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Great article! Thanks for posting it, Tina. It does not mention one

thing for which carnitine is sometimes touted, and that is the

enhanced absorption of other nutrients. Did the geneticist address

that at all? It is one of those ambiguous claims, but I am curious

because carnitine (and CoQ10) are so frequently recommended.

in NJ

>

> 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

>

>

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:

He didn't mention any side effects. I tried to find some information

by searching and I came up empty.

Tina

>

> Great article! Thanks for posting it, Tina. It does not mention

one

> thing for which carnitine is sometimes touted, and that is the

> enhanced absorption of other nutrients. Did the geneticist address

> that at all? It is one of those ambiguous claims, but I am curious

> because carnitine (and CoQ10) are so frequently recommended.

>

> in NJ

>

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