Re: Carnitene , Looking for it help.

[Guest guest]

I assume you are in the US - can you order it thru a canadian prescrip site? No

idea how those work as I am in canada and very thankfully I can get it covered

here (same strength you are using - and it is about $238 for one month's supply)

Hope you can find the info you are looking for. This made a great difference for

my son and we see seizures return if we miss it.

Jenn

Carnitene , Looking for it help.

My son was prescribed, Carnitene the insurance wont cover it ,even

had the Doctor call and they want do it.Out of pocket it is $150.00,

for a months supply.Does anybody know where you can order this drug

cheaper, looked on the net couldn,t find the prescription

strength.Cade needs the 330mg tabs. Thanks CADENS Mom Viola

[Guest guest]

Viola, have you been prescribed Carnitor? My daughter Kristan is on

it and we have it covered, I know how expensive it can be. I'm in

Canada. I read in a previous post that if you order a cheaper kind

that it is not the same and your child can have increased seizures

from the cheaper one. Be careful.

Satnam

>

> My son was prescribed, Carnitene the insurance wont cover it ,even

> had the Doctor call and they want do it.Out of pocket it is

$150.00,

> for a months supply.Does anybody know where you can order this drug

> cheaper, looked on the net couldn,t find the prescription

> strength.Cade needs the 330mg tabs. Thanks CADENS Mom Viola

[Guest guest]

We had the same trouble here (we are in New Zealand - we were trying to get it

subsidised on prescription through as opposed to insurance) the first time

was prescribed it, but the second time round our neurologist re-applied

on our behalf with an accompanying journal paper written by (amongst others) Dr

De Divo - metabolic neurologist.

I can only find an abstract, the paper he actually copied and sent was about 5

pages long, and was quite definite about the potential medical need for

supplementing with L-carnitine when on the keto diet. (and in his opinion when

on depakote, and especially so when on both together).

Once the actual journal paper had accompanied the request, we got the approval

to have it subsidised on prescription.

This is a bit of a controversial one btw, not all Drs agree that supplementing

along with depakote or the diet as a preventative measure to avoid carnitine

deficiency resulting, is a neccessary one. Personally, I feel it is warranted

only if bloods show a definite deficiency and the child is symptomatic, but I am

a bit biased because has reacted adversely seizure wise to it in the

past, meaning I am probably a bit over cautious about it all.

Anyways, I have tried to copy the abstract here, not sure if it will work - if

it doesn't I could send it as an attachment to your email address (the webring

won't accept attachments). Thought it might help to have some medical literature

to attach if you want to try re-applying, cos yes, it is v expensive....

1: Epilepsia. 1998 Nov;39(11):1216-25. Related Articles, Links

L-carnitine supplementation in childhood epilepsy: current

perspectives.

De Vivo DC, Bohan TP, Coulter DL, Dreifuss FE, Greenwood RS, Nordli DR

Jr, Shields WD, Stafstrom CE, Tein I.

Neurological Institute, Columbia-Presbyterian Medical Center, New

York, New York 10032, USA.

In November 1996, a panel of pediatric neurologists met to update the

consensus statement issued in 1989 by a panel of neurologists and metabolic

experts on L-carnitine supplementation in childhood epilepsy. The panelists

agreed that intravenous L-carnitine supplementation is clearly indicated for

valproate (VPA)-induced hepatotoxicity, overdose, and other acute metabolic

crises associated with carnitine deficiency. Oral supplementation is clearly

indicated for the primary plasmalemmal carnitine transporter defect. The

panelists concurred that oral L-carnitine supplementation is strongly suggested

for the following groups as well: patients with certain secondary

carnitine-deficiency syndromes, symptomatic VPA-associated hyperammonemia,

multiple risk factors for VPA hepatotoxicity, or renal-associated syndromes;

infants and young children taking VPA; patients with epilepsy using the

ketogenic diet who have hypocarnitinemia; patients receiving dialysis; and

premature infants who are receiving total parenteral nutrition. The panel

recommended an oral L-carnitine dosage of 100 mg/kg/day, up to a maximum of 2

g/day. Intravenous supplementation for medical emergency situations usually

exceeds this recommended dosage.

PMID: 9821988 [PubMed - indexed for MEDLINE]

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Oct 2 2003 18:06:20

Carnitene , Looking for it help.

My son was prescribed, Carnitene the insurance wont cover it ,even

had the Doctor call and they want do it.Out of pocket it is $150.00,

for a months supply.Does anybody know where you can order this drug

cheaper, looked on the net couldn,t find the prescription

strength.Cade needs the 330mg tabs. Thanks CADENS Mom Viola