Re: Re: Glenda - elevated carnitine

[Guest guest]

Glenda - When we started the diet, we gained almost immediate control.

Then about 3 months into it, we weaned our last drug (Tegretal). We

started seeing withdrawal seizures and I contacted a dietitian who

recommended that we add a carnitine supplement. We did and the seizures

stopped. Now, who knows if it was due to the carnitine or not, but

bottom line... they stopped. After a few months on the carnitine (and

fighting to get the stinking pills down ) we decided to wean him off

the carnitine - we did with no additional seizures.

Now....... 3+ years later...... we have been seeing a few more

seizures. I talked with his pediatrician about adding the supplement

back (you know, experts are mixed as to whether or not every child on the

diet needs to be on it or not). Anyway, we tried it for a month........

the whole time, fighting with my insurance to cover it ($110 per month).

They said NO. We didn't really see any improvement this time around &

without lab work it's kinda hard to argue with them at this point. So,

after being OFF the carnitine for 2 weeks, we drew the labs.

His labs were:

total: 134 (normal range 33-87)

free: 120 (normal range 28-71)

esters: 14 (normal range 4-16)

I have a few theories that I faxed to his doc this morning. I'll let you

know what he says.

Kathy

On Mon, 19 Jan 2004 05:40:13 -0000 jgmsteele@... writes:

> Hi Kathy,

> Unfortunately, no one has been able to help me with this. Her

> pediatrician ordered the test for me because I was concerned she

> might be low. Her neuro didn't think the test was necessary, but I

>

> thought it might give us some clues on the breakthrough seizures.

> Her pediatrician said all along he wouldn't know what to do with the

>

> results, but he'd be glad to order the test (he pretty much does

> anything I ask for, bless his heart!). I've e-mailed her neuro with

>

> 2-3 questions three different times over the last couple of months.

>

> I keep asking about the elevated carnitine, and he keeps ignoring

> the

> question. He is otherwise unreachable unless it is an emergency.

> Sooooooo, I have no more information now than before.

> We go to the new epilepsy center next week, so this will

> definitely be on our list of questions. I'll let you know if they

> have any information for me.

> By the way, is on carnitine supplements now, or has he

> ever

> been? Macie has never taken any....which is all the more baffling.

> Take care,

>

>

> Glenna

>

> -- In ketogenic , kathy j irwin <kathyirwin@j...>

> wrote:

> > What did your pediatrician say about these elevated levels?

> 's

> came

> > back the other day just about the same. We are all scratching our

>

> heads.

> > Wondering what you found out.

> > Thanks!

> > Kathy

> > On Wed, 10 Dec 2003 23:25:20 -0000 " Glenna Steele "

> <jgmsteele@y...>

> > writes:

> > > Hi all,

> > > I know I'm probably wearing all of you out lately, but I got

>

> > > Macie's carnitine lab results back today and am very confused.

>

> I've

> > >

> > > searched on the web, but can only find articles/info about

> > > deficiencies.

> > >

> > > Here were the results:

> > >

> > > Total: 117 (normal range 33-74) abnormal flag

> > > Free: 97 (normal range 27-62) abnormal flag

> > > Esters: 20 (normal range 3-16) abnormal flag

> > >

> > >

> > > Her ped ordered these for me. I'm going to fax them to her

> > > neuro,

> > > but it will probably take a while to hear back.

> > >

> > > Any knowledge anyone could share would be greatly appreciated!

> > >

> > > Glenna

> > >

> > >

> > > P.S. CBC, mag, cal levels were all in normal range. Still

> waiting

> > >

> > > on biotin profile. Won't really know what to do with that,

> either!

> > >

> > >

> > >