Re: Attn: Carnitine experts

[Guest guest]

Not that much of an expert , cos wasn't able to stay on the

stuff each time long enough to really become one:) ...but - here's what I do

know - the levels on their own are not that accurate unless taken in combination

- like the free carnitine and the total carnitine level together determine

whether there is a definite deficiency. In other words - what the body needs and

what is available has to be calculated, so it is done on a ratio basis. Do you

have the other figures from the testing? It should have been a carnitine profile

that had done, not just a one off of the actual carnitine level in the

blood.

Blood levels themselves though are still not that accurate even when the full

profile is done, as most carnitine is stored in the tissues, only abut 2% of the

body's stores circulates in the blood, so a tissue or muscle biopsy is actually

the only way of truly determining a deficiency.

But - obviously this is not practical, so bloods are used as a guide, with

supplementation usually recommended if the child is symptomatic. Lack of energy,

unexplained weight gain, 'seizures', slowed growth, heart arrythmias are a few

of them, but the list is pretty extensive.

's bloods (profile, ratio etc) are showing him as quite severely

deficient, has been since about Feb this year - in his case probably a combo of

the keto (using long and short chain fats which is what can deplete carnitine)

plus depakote, but we are not supplementing as he is not symptomatic. Neuro and

I are both v wary of trying it again anyway, due to the seizure increase he had

both times we have previously tried it. However - his seizure increase was more

a chain of event thing, like it increased fat metabolism, ketones went sky high,

med levels rose accordingly and so on.

Some children however do v well on it - it can be the last step to total

seizure control, others though react unfavorably - unfortunately one of those

'won't know till you try' things...

And yes, a carnitine deficiency can be a cause of seizures fullstop, basically

a metabolic disorder (primary carnitine deficiency as opposed to secondary

carnitine deficiency from say the diet or depakote..) that is usually determined

by muscle biopsy I think.

If you can access and post his other numbers, I can have a go at seeing if the

actual ratio is in the 'deficient range', or has your neuro already done this?

----- Original Message -----

From: michelle paulson

Hi all-

Just got 's carnitine level back (haven't

checked it in one year) and it came back as 19 (normal

range 26-65). Contemplating a supplement but don't

want to unless it's absolutely necessary.

Just wondering if you all think that number warrants

supplementation. 's DEFINITELY the the

wobbly/uncoordinated side so it certainly is no

surprise he's deficient.

PS - could carnitine deficiency be the ROOT cause of

seizures if kids don't endogenously produce it

themselves???? My pediatrician hasn't ruled it out.

Hhhmmmm.... always searching for answers.

Many thanks!

(mom to - 2.5yrs. old - ketokid since

6/03 - med free - seizures down to every 2 wks. so

getting closer!)

[Guest guest]

You know where he is wobbly and uncoordinated to start with, I would

give it a shot. Jess was like and had a terrible time with the

stuff, gave her a very awful bout of seizures, but in Coop's case I

would think its worth a shot. I know it really helps some kids with

their motor problems. But if you do see an increase in seizures, follow

your gut and don't let no one else talk you out of what you believe

The other Michele

& Hill wrote:

> Not that much of an expert , cos wasn't able to stay

> on the stuff each time long enough to really become one:) ...but -

> here's what I do know - the levels on their own are not that accurate

> unless taken in combination - like the free carnitine and the total

> carnitine level together determine whether there is a definite

> deficiency. In other words - what the body needs and what is available

> has to be calculated, so it is done on a ratio basis. Do you have the

> other figures from the testing? It should have been a carnitine

> profile that had done, not just a one off of the actual

> carnitine level in the blood.

> Blood levels themselves though are still not that accurate even when

> the full profile is done, as most carnitine is stored in the tissues,

> only abut 2% of the body's stores circulates in the blood, so a tissue

> or muscle biopsy is actually the only way of truly determining a

> deficiency.

> But - obviously this is not practical, so bloods are used as a

> guide, with supplementation usually recommended if the child is

> symptomatic. Lack of energy, unexplained weight gain, 'seizures',

> slowed growth, heart arrythmias are a few of them, but the list is

> pretty extensive.

> 's bloods (profile, ratio etc) are showing him as quite

> severely deficient, has been since about Feb this year - in his case

> probably a combo of the keto (using long and short chain fats which is

> what can deplete carnitine) plus depakote, but we are not

> supplementing as he is not symptomatic. Neuro and I are both v wary of

> trying it again anyway, due to the seizure increase he had both times

> we have previously tried it. However - his seizure increase was more a

> chain of event thing, like it increased fat metabolism, ketones went

> sky high, med levels rose accordingly and so on.

> Some children however do v well on it - it can be the last step to

> total seizure control, others though react unfavorably - unfortunately

> one of those 'won't know till you try' things...

> And yes, a carnitine deficiency can be a cause of seizures fullstop,

> basically a metabolic disorder (primary carnitine deficiency as

> opposed to secondary carnitine deficiency from say the diet or

> depakote..) that is usually determined by muscle biopsy I think.

> If you can access and post his other numbers, I can have a go at

> seeing if the actual ratio is in the 'deficient range', or has your

> neuro already done this?

>

>

> ----- Original Message -----

> From: michelle paulson

>

>

> Hi all-

> Just got 's carnitine level back (haven't

> checked it in one year) and it came back as 19 (normal

> range 26-65). Contemplating a supplement but don't

> want to unless it's absolutely necessary.

>

> Just wondering if you all think that number warrants

> supplementation. 's DEFINITELY the the

> wobbly/uncoordinated side so it certainly is no

> surprise he's deficient.

>

> PS - could carnitine deficiency be the ROOT cause of

> seizures if kids don't endogenously produce it

> themselves???? My pediatrician hasn't ruled it out.

> Hhhmmmm.... always searching for answers.

>

> Many thanks!

> (mom to - 2.5yrs. old - ketokid since

> 6/03 - med free - seizures down to every 2 wks. so

> getting closer!)

>

>

>

>

>

>

>

>

[Guest guest]

Dear Jill

When I make out a menu and start the juggling, it is often easier to increase

the protein and lower the carb, still keeping the ratio. Is this what you mean?

Personally, I would rather have more protein than carb. She is on a 2.5:1,

but only 900 calories, so it all counts.

Thx. ...mum to little , who is doing well on lowered ratio and lowered

calories

Jill jill@...> wrote:

Claire's latest Free Carnitine levels came back as 19, but it has been as

low as 14. Supplementing causes increases in seizures and diarrhea so I

have given up on supplementing.

Instead I have decreased the ratio by increasing protein in the form of red

meats to try to increase it that way.

I am awaiting her next blood test which will be in a couple of months.

Btw, after making this change she has been seizure free!

Jill

At 11:20 PM 8/09/2004, you wrote:

>Hi all-

>Just got 's carnitine level back (haven't

>checked it in one year) and it came back as 19 (normal

>range 26-65). Contemplating a supplement but don't

>want to unless it's absolutely necessary.

>

>Just wondering if you all think that number warrants

>supplementation. 's DEFINITELY the the

>wobbly/uncoordinated side so it certainly is no

>surprise he's deficient.

>

>PS - could carnitine deficiency be the ROOT cause of

>seizures if kids don't endogenously produce it

>themselves???? My pediatrician hasn't ruled it out.

>Hhhmmmm.... always searching for answers.

>

>Many thanks!

> (mom to - 2.5yrs. old - ketokid since

>6/03 - med free - seizures down to every 2 wks. so

>getting closer!)

>

>

>

>

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[Guest guest]

Yes , especially protein sources high in carnitine like lamb and beef.

Take care

Jill

At 10:17 AM 9/09/2004, you wrote:

>Dear Jill

>

>When I make out a menu and start the juggling, it is often easier to

>increase the protein and lower the carb, still keeping the ratio. Is this

>what you mean? Personally, I would rather have more protein than

>carb. She is on a 2.5:1, but only 900 calories, so it all counts.

>