Re: Rhonda tic/ anyone about biotin level

January 25, 2004

Hi Rhonda,

Thanks for the input. Thing is, Macie isn't on any meds and

hasn't been for about 2 years now. Is there a possiblity the diet is

acting like a med she doesn't need/can't tolerate anymore? She is

definitely having some seizure activity, too. She is such a

mystery. We also finally just got her biotin levels back from her

November blood draw. They were extremely high, even though we only

supplemented for a few days (and had discontinued supplements weeks

before the test). Her carnitine levels were also way high. We've

got a pretty long list of things to discuss at her appointment next

week!

THANKS!

Glenna

> Shan had a lot of eye movement when she was on tegretol prior to

the diet.

> This went on for about 5 years. She could not give us eye contact

for more

> than a couple seconds. When we weaned her off most of her med she

could

> give us eye contact and hold it. It definitely was a side effect

to the

> tegretol. Perhaps this is the same situation for you guys.

>

> Rhonda

>

> * I've followed your post, and just read Barb's about the

possiblity

> of a tic. Macie was doing a funny thing with her eyes a while back

> (still is), and we talked to her neuro about it. It was very

> similar to they type of eye movement she had during seizures. We

> videotaped it, he studied it and saw her do it in his office, and he

> said it was some sort of tic. He said children with epilepsy are

> more prone to tics, too. She also had an EEG and we saw her

> physically do this movement during her awake portion, but her awake

> part was completely clean. We were still confused but took his

> explanation.

>

January 28, 2004

Glenna,

High biotin and carnitine levels suggest that Macie may have

inadequate enzyme levels to " digest " those. Did they do biotinIDASE

levels? Depakote is a prime suspect in this one. Dep. can either

deplete and/or inactivate biotinidase. It happened to my daughter,

and we didn't know it until we had our first labs to start the

diet. Hers was depleted-- because biotin was high and bdase was

low, low, low. Off the depakote, now, she's great on both. We still

supplement biotin and will continue to do so unless her levels get

too high.

Here's a little tidbit I pulled from nutrition.org. It is from a

good article there on Carnitine, but it is very technical. The names

of the enzymes are ridiculous to pronounce...but they do tell exactly

what they do.

***************************

Carnitine is a substrate for carnitine palmitoyltransferases I and II

and carnitine acetyltransferase, enzymes that participate in and

regulate fatty acid utilization. Carnitine and its esters are

transported across the inner mitochondrial membrane specifically by

carnitine-acylcarnitine translocase.

****************************

Carnitine deficiency is rare in humans unless they are

malnourished... oh, yeah, the keto diet. Macie might be secondarily

deficient because she's not using what is available in her body.

(same with biotin)

Since you have an appt. soon, I would ask the doc. about doing the

substrate levels and the enzyme levels again. As a screening, you

should do free and total carnitine. If those are weird, you can do

specific quantitative tests. Those are usually for kids with inborn

errors of metabolism. Sometimes I think the docs forget, to a

certain extent, all of our keto kids can, even if only rarely,

have " errors " in their metabolism. Metabolic disturbances are a

common, if not primary, cause of seizures. Those are often the

easily treatable kind. You find the problem, fix it, done. On the

diet we treat the seizures, which have hopefully been found not to be

due to metabolic problems. But, we can (rarely) induce seizures if a

metabolic problem occurs because of the diet. Like everything else,

our kiddos are all sensitive to different things.

Hope you really like your new team!

Cammie

> Hi Rhonda,

> Thanks for the input. Thing is, Macie isn't on any meds and

> hasn't been for about 2 years now. Is there a possiblity the diet

is

> acting like a med she doesn't need/can't tolerate anymore? She is

> definitely having some seizure activity, too. She is such a

> mystery. We also finally just got her biotin levels back from her

> November blood draw. They were extremely high, even though we only

> supplemented for a few days (and had discontinued supplements weeks

> before the test). Her carnitine levels were also way high. We've

> got a pretty long list of things to discuss at her appointment next

> week!

>

> THANKS!

>

> Glenna

>

January 28, 2004