Re: carnitine/ /Bill-

[Guest guest]

I think it will be an individual thing - like what Bill was saying I

think is that say if a kiddie was on 1000 cals, and they weren't previoUsly

metabolising all of the fat content sufficiently, then if all that fat suddenly

starts absorbing etc correctly, then the child would then in effect be on more

calories than they were when they weren't 'getting' them all. And a cal decrease

might therefore be required.

In 's case, where he had recent weight gain, and where you are thinking

that it may have been because he has been storing rather than fully metabolising

the caloric fat, then my thinking is that if this was his problem - ie - carn

deficiency - then putting that right should even things out calorie wise on his

existing level. He will metabolise the caloric fat effectively rather than

storing some, which is what he may recently have been doing.

But - the addition of carnitine can also have the (desired) effect of

increasing energy levels, so overall metabolically there can therefore be a

shift in their total cal requirements anyway, so a double whammy if you like, on

how each child will react - which is what happened to . He was more

energetic (er till the seizures broke thru and dragged him back down...) - burnt

thru more cals than we had allowed for (and some body fat in the process)

meaning overkill in ketone production.

I think you are going to have to watch and wait and see how Coper reacts

individually metabolically - if he continues to gain weight after the carn is in

a theraputic range, then you may have to lower cals, if he starts losing weight,

(that is what you are aiming for?) - then you may have to lower his ratio until

his 'body fat burning process' is complete, then see where the land lies weight

and ketone wise once he is at his desired weight for height. That's why I

thought it might be asking for trouble adjusting anything diet wise right now,

because you don't really have any way of knowing how he is going to react yet.

Dosage wise at 36.6 pounds, that makes him approx 16.5 kilos (I think...?), so

at the recommended 'theraputic' dose of 50 mgs per kg, that would give 825 mgs

per day. As the caspules come in doses of 330 mgs, the 3 per day at 990 mgs

would therefore be the closest to that figure.

But - Dr De Vivo (and Sigma Tau I think?) recommend between 50 and 100 mgs per

day, meaning that according to them, he could go as high as 1650 mgs per day,

but that sounds like a helluva lot to me, we only got to the 50 mgs per kg per

day before we pulled the plug with . And we know from blood testing that

same week, that he had way overshot the mark - his carn levels had gone thru the

roof just on the 50 mgs per kg per day. Like I said though - don't count

's reaction as being set in concrete - he does this with most things -

goes way over the top with whatever we try....er I think the word is

'hypersensitive'

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

From: michelle paulson

OK - started the carnitine supplement this afternoon.

I'm adding it slowly - a 330mg.tablet 1x per day for a

few days and then if all goes well, will add another

and go from there. My neuro. thinks 990mg/day seems

right for his weight (36.6lbs.). I'm petrified and

excited at the same time.

Am somewhat confused about calories and carnitine. I

understand that it is supposed to help metabolize fats

better but it would seem to me that if seizures do

occur as a side affect, calories might need to be

RAISED instead of lowered to allow for a speedier

metabolism - wouldn't want the kid to " run out " before

the next meal. Bill, the way I understood your

message - you think cals may need to be " lowered "

to allow for the metabolism change. Why am I not

getting this - I think I need the Carnitine 101 class.

The reason I'm asking is that is currently on

1080 cals (37 in. and 36.6lbs.) His dietician thought

I'd be better off in the 980-1030 range before

carnitine ever entered the picture. I'm just hoping

his cals. aren't high enough to trigger the seizures

if, in fact, kids should be a tad on the low side.

Thanks, guys - and thanks, for that carnitine

paper.