Re:breath support

[Guest guest]

We had this with reading aloud. I think Magnesium and carnitine both helped this

for my son. Also working on core back muscles so the trunk is able to remain

more upright rather than slumped then the airways can be more open.

[Guest guest]

I'm open to the fact that perhaps there are some children

that don't need therapy -just a vitamin or supplement, but breath

control and other issues are something that is addressed in therapy

with success for many children. My son was tested for everything and

not deficient in anything -yet had breath issues he had to learn to

overcome. Reading out loud (even though he does it well now) is

tiring for him in comparison to reading in his head. I just posted an

article about horn therapy on this topic.

As far as carnitine since there are always new people here...just want

to remind that this is a supplement that you do not want to use prior

to testing. You would want to know if your child is deficient in this

and if he or she is -take is serious. My son tested normal in it...if

normal and you give to much of it -your child will get a " fishy "

smell. I believe if you stop using it the fishy smell will go away

(but as if our kids don't have enough problems!)

Archive

CARNITINE DEFICIENCY testing and archive

Just a reminder that carnitine unlike the amino acid carnitine is

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

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

this group out of those children tested.

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

blood draws ordered through our regular pediatrician and the labs done

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

prescription carnitine with a referral to a geneticist that specializes

in metabolic disorders. Try the basics which mean appropriate

therapies for your child and the oil therapy and in most cases that

alone will create remarkable surges and you can save your time and

money for karate and swimming lessons -maybe some hippo therapy or a

much needed vacation for the family. The biomedical group if not

needed is complex and expensive. And BTW =the brilliant Dr.

is a

traditional medical doctor/pediatrician and so is my co author of The Late

Talker book neurodevelopmental pediatrician Dr. Marilyn Agin. Watch

what you

post here about regular medical doctors because they are part of this

group and

they have feelings!

And in case it wasn't clear -if you go through your ped it can all be

covered by

your insurance. My son's was.

Here's more on carnitine from an archive

Re: Levocarnatine

Is what you are using prescription?

" Certain levocarnitine products have been specifically approved by

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

available only with your doctor's prescription. Other levocarnitine

products are sold without a prescription as food supplements and

should not be used to treat serious levocarnitine deficiency. "

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

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

not the reason to supplement with prescription carnotine. The

possible side effect of sudden death from carnotine deficiency

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

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

specializes in metabolic disorders and there have been a few posted

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

about carnotine deficiency?

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

alarmingly high number that tested low in carnotine which is

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

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

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

in carnotine:

" Going to a geneticist that specializes in metabolic disorders would

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

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

below might help you find more answers.

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

United Mitochondrial Disease Foundation

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

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

that specializes in metabolic disorders isn't concerned with his

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

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

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

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

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

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

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

increased or lowered.

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

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

to the bottom.

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

HTH,

Tina "

Some have suggested the better doctors in this area because

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

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

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

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

your pediatrician orders the blood draws that we talk about here

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

deficient.

More archives below

Unlike other supplements -a carnitine deficiency could come with the

most severe consequence over time since carnitine deficiency is

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

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

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

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

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

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

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

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

why you want to investigate this aggressively with a geneticist.

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

there are not yet enough geneticist who specialize in metabolic or

mitochondrial disorders.

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

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

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

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

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

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

a geneticist who specializes in metabolic disorders. I believe based

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

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

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

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

amino acid were off the charts. Typically it's a rare disorder

affecting one in 20 to 40,000. This was also the reason I took my

son Tanner for all the blood testing -to test for this one deficiency

since it can be so severe if left untreated.

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

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

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

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

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

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

BC/BS.

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

could be

helping strengthen heart muscle. Low levels are associated with a

floppy

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

death can

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

It

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

battery

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

may be

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

run

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

end of quote

Carnitine and Carnosine are 2 TOTALLY different supplements.

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

into the mitochondria.

There has been some research done on carnoSine (amino acids

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

There have been some preliminary studies that show benefit of

carnaware in autism and other speech disorders. There are many

members with personal experience with both carnosine and carnoware.

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

based on what vit E alone can do.

Without sufficient CarniTine...the mitochondria (or

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

muscle weakness, heart problems to severe brain and metabolic

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

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

exact cause.

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

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

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

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

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

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

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

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

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

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

serious affects if left untreated. If discovered consider it a

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

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

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

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

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

here.

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