I just pulled up an old paper about TS and CVS, if you send me your
email address I will dig out the paper and zap it to you.

coQ10 seems to be amazing stuff. I feel like I need to say I do not
sell this stuff or have any financial interests! It is being
researched for several neuro diseases, maybe it will even help the
TS for your son?

I posted the typical dosage suggestion but here it is once more.
If you go with this, please let me know. We are hoping to go to
clincial trial but need to see how promising the supplements are.

I am also taking coQ10 for heart health!

general recommendations - but each individual should be treated
under the care of their own physician:
Carnitor 100 mg/kg/day, divided into 2 or 3 dosages/day. Adult
dose: 3 tablets (330 mg each) three times a day.
Co-Q 10 mg/kg/day, only one dose/day. Adult dose: 300 mg/day - some
take 500 mg.

It does seem important to use gel caps, and as people are taking
extra to abort an episode, try to steer clear of added Vit E as well
as Soy/Lecithin (which is often derived from Vit E) so there is no
over dose of "E". Try for natural gel caps manufactured in Japan.

Those who are prodroming will increase their supplements. All this
needs to be cleared with your MD of course.

Did you get the chance to read the thread on the cvsaonline message
board about mito theory and these supplements? Amy does a great job
explaining a complicated subject!

Good luck, I hope this will help your son,
Ginny





--- In cyclicvomitingsyndrome@yahoogroups.com, "Linda Piersma"
<lindapiersma@a...> wrote:
> Thanks so much Ginny for that information. I have a big 27 year
old son with Tourette's syndrome and CVS and would really appreciate
dosage info on these two suppliments. My son has the severe
abdominal pain with the nausea and vomiting. Do you know if that
make a difference in how well these sullpiments work? Ironically, I
take CoQ10 myself because it's a good for heart health.
> Linda Piersma
> ----- Original Message -----
> From: macd4281
> To: cyclicvomitingsyndrome@yahoogroups.com
> Sent: Monday, March 21, 2005 8:32 AM
> Subject: [Cyclic Vomiting Syndrome] using supplements for CVS?
>
>
>
> Hi
>
> I am a the parent of a young adult with CVS and a member of the
cvsa
> sponsored message board. I just tripped over this forum.
>
> If you are not also reading the CVSAonline Message Board you
might
> not be aware of the success some people are having using CoQ10
> and/or L-Carnitine and Chelated Mg to prevent and abort cycles.
>
> Dr. Richard Boles, Director of the CCS Center for Metabolic and
> Mitochondrial Disorders, Division of Medical Genetics, LA
Childrens
> Hospital, is in contact with us about this & is discussing the
early
> findings with Dr. B U K Li at Childrens Memorial Hospital in
> Chicago. Both Dr. Boles and Dr. Li are Principal Medical
Advisors to
> CVSA.
>
> Another message board member and I have compiled a list of
questions
> about using supplements to treat CVS. After three months of use
Dr.
> Boles has a list of questions.
>
> We have the suggested doses of these supplements, based on the
> weight of a child and standard adult use.
>
> If anyone is interested, please let me know. This is currently
> looking very positive. Although it is said to take up to 3
weeks
> for coQ10 to kick in, some have aborted a cycle within 30
minutes of
> a dose and others have reported feeling better within days.
>
> If you do take a look at the CVSAonline web site message board,
> please read Mitochondrial, coQ10 and LCarntine for a brief
overview.
>
> I can also paste the information onto this board if that is more
> convenient.
>
> Thanks so much! It is great to have found another forum for
> discussion of CVS.
>
> Ginny
> macd428@c...
>
>
>
>
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