My son is 3 and started the cocktail a year ago this month. We have
seen tremendous improvements, but waited until a diagnosis through
muscle biopsy was made. I initially wanted to start him on the
cocktail as soon as there was a suspicion (it was suspected mito in
June 2004, confirmed January 2005) but our doc explained that being
on the cocktail before the diagnosis is confirmed can affect the
results of the tests (biopsy and such) and make a specific diagnosis
harder to nail down... for this reason we waited.
A year ago this week I made an entry in our journal, and on a daily
basis Brandon dealth with severe tremors, frequent severe
hypoglycemia, frequent high fevers (105-107 at times), hypertonia,
severe leg cramps (he would literally sit in his high chair for
hours playing play doh and asking for leg rubs), he didnt talk at
all, he slept 17-20 hours a day, he had chronic diarrhea, very slow
weight gain, very very ataxic (stumbly), and generally tired.
Today we deal with the diarrhea still, and slow weight gain, and
occasionally the ataxia flares up. he is also still completely
nonverbal, but he currently knows over 200 ASL signs, and is
learning more every day!... everything else is either gone
completely, or barely a problem.
the cocktail has made SUCH a difference for us.
Keely
www.caringbridge.org/visit/brandonschellenberg

--- In Mito@yahoogroups.com, "Janet Sample" <thesamples@h...> wrote:
>
> We started my son now 13 just after he turned 10. In Nov 2002 he
had a stroke like event where he could not remember names of things--
even ketchup and how to play his game boy. This is a kid who had
eaten hot dogs with ketchup and played game boy since he was 5.
>
> Before and during this time for about a year and a half we dealt
with biweekly trips to the doctor and hospital for enema's. He
complained of stomach pain daily. After trying diet and experts at
the childrens hospital at the state university we went to the doc
who diagnosed my sister and myself with MELAS.
>
> Why I had not thought of starting CoQ10 and Carnitor sooner I do
not know. We started him on Qgel, now he takes the carniqel with
carnitor and CoQ10 in it. Since January of 2003 we have not had any
doctor visits for severe constipation. The only time we have
problems is when he does not take the Carniqgel for a couple of days
(I leave it up to him now that he is 13) or if he eats a big meal.
>
> He was diagnosed with mild MELAS via blood test in January 2003.
>
> Janet Sample
> ----- Original Message -----
> From: dawn pische
> To: Mito@yahoogroups.com
> Sent: Friday, December 30, 2005 2:02 PM
> Subject: Re: [Mito] Cocktail
>
>
> Karen,
> Hi. My son Josh is 11 and has non specifed mito. He has
been on the carnitor for over a year. He was given it after his
muscle biopsy, but before the results came back. Since Josh does
not have too many signs I don't know if there has been a great
improvment. I do think he would not be doing as well without it--if
that makes sense.
> Thanks,
>
Dawn
>
> Karen Hunt <karenehunt@c...> wrote:
> Hi All,
>
> My son, hopefully will be getting a fresh muscle biopsy this
year. He is 14 and still not diagnoses. I know there alot of
people in the same situation. My question is who out there found
they saw a big improvement once the Mito Cocktail was started and
did most of you get on the cocktail after being diagnosed?
>
> thanks
>
> karen h
>
> -----Original Message-----
> From: Mito@yahoogroups.com [mailto:Mito@yahoogroups.com]On
Behalf Of Dirk and Colleen
> Sent: Friday, December 30, 2005 10:49 AM
> To: Mito@yahoogroups.com
> Subject: Re: [Mito] Tremors or Tics
>
>
> Hello,
>
> My son, 7 yet to be diagnosed with anything, they say
presumed mito???? Any how he had a terrible tremor in one arm and
up his neck effecting his head doctors have no idea why but its gone
away I think its because of the prednisone he was on as it went soon
after he was off of it. I too would be interested if anyone with
mito kids have experience tremors as well maybe I am wrong about the
prednison.
>
> Colleen
> ----- Original Message -----
> From: sherylsuml
> To: Mito@yahoogroups.com
> Sent: Thursday, December 29, 2005 8:58 PM
> Subject: [Mito] Tremors or Tics
>
>
> Hello all,
> I have been trying to catch up with the post since coming
back from the
> holidays. I noticed several references to tics or tremors.
My daughter
> has started to do this. It's like her arm , hand or legs
will twitch.
> It's becoming more noticeable. I thought it was in
relation to a
> seizure medication or maybe some form of seizure. I think
I read
> somewhere about it being a problem with the nerves. Do any
of you have
> any experience with this. It started about a month ago and
would just
> be sometimes, now it is much more noticeable. Any advice
would be
> appreciated.
> Sheryl
>
>
>
>
>
>
>
>
>
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