Re: Attn: Carnitine experts/

[Guest guest]

Hi -

Boy, you qualify as an " expert " to me - Thank you for

all that info! Wish I would have consulted w/you

instead of my neuro b/c my neuro only requested a

" carnitine level " instead of " profile " which means I

only got one number. What a waste of time. Pisses me

off, actually, and will ask her why she didn't order a

profile when she finally decides to call about the low

number in the first place.

Two things - one - was reading that if it is a true

primary deficiency, red flags would have been raised

at his biochemical screening test when initiating the

diet one year ago. Apparently highly elevated

dicarboxylic acids in the urine signal a problem w/the

normal pathway of metabolism. All tests came back

perfect at that time. Plus, looking back - had a

" profile " done in March of this past year and they

were OK. So... something has happened since then.

Probably has something to do w/me taking away animal

fat/protein the past 3 months. He hasn't ingested any

food to produce it though, I guess his body could have

endogenously been producing. If anything - a

secondary deficiency due to the diet but still

interfering w/his body being able to burn fat.

Troubling.

He certainly has the symptoms - mainly hypotonia and

uncoordination but it's definitely gotten worst.

Defintely has slowed down ht. wise and has gained

weight. Nothing else " stands out " .

He has gained over a lb. in the past month with no

recent growth in height. My soon-to-be new

nutritionist has not met him yet but got his paperwork

and called to tell me she figured him to be in the

980-1030 cal. range (he's at 1080 now) w/16.8g protein

(he's currently getting 19g/day). So, we are in the

ball park but I may need to do some adjusting there to

compensate for this recent weight gain. We meet w/her

Sept. 30 so I don't know if I should sit tight until

then or reduce one or both (cals/protein) before we

meet. Any suggestions?

So, had problems on carnitine, huh? I've

certainly read that it is common so that's why I'm

scared although it would certainly be nice to be on

the opposite end and see those last seizures disappear

w/regained strength. He used to be my strongest kid.

MANY thanks, , our resident expert on nearly all

aspects of this diet - sure is a bummer that you don't

get paid the bookoo bucks that some of our incompetent

Dr.s do to figure things out.

(mom to )

--- & Hill rich.sue.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!)

>

>

>

>

>

>

>

> [Non-text portions of this message have been

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