Re: - Info on Idebenone (spelled it wrong before)

[Guest guest]

,

I am giving my daughter a Co Q 10 right now! Gee maybe you have hit on

something.

I think it would be nice if you could tell the parents over on (

groups) about your experience. I know they would appreciate it.

[ ] Update on and his regression

>

>

> Hi group

> Haven't posted in a while - been really busy around here! For

those

> of you who don't remember, NIcholas was a success story on here

who

> went for a bad regression after a trial of Nystatin went terribly

> wrong.

>

> Nick is 3.1 years old, and has been on many supplements since age

22

> months. We started Houston enzymes at age 2.10 (October 2001)

after

> 10 months of strict GFCF diet. Results were spectactular - even

> after we reintroduced gluten and casein into diet. The only

problem

> was that stools continue to be quite loose with a red ring around

> anus. We convinced our doctor to try Nystatin - we built up

super

> slowly to full dose, and added probiotics (ProbioGold) Die-off

(or

> what we thought was die-off) was severe, although we stuck it out

for

> 6 looonnng weeks. Nick was fading on us into severe autism

(where he

> never was before), and we finally jumped ship and stopped the

> Nystatin - no improvement. Stopped the probiotics - no

improvement.

> We stopped all new supplements we had started - no improvement.

I

> have never been so scared in my life. To have a child regress

like

> that with no apparent cause. He was stimming out of control. I

was

> worried it was a late reaction to the gluten and casein, but the

> thought of going back to the diet was horrendous to me. (but we

would

> have if we had to) Nick was eating healthier than he ever had

before,

> largely because I would use one Breton wheat cracker in small

pieces

> each meal as reinforcers, and he would eat ANYTHING for a little

> piece. This regression lasted for about a month after

discontinuing

> the Nystatin and everything else new.

>

> Anyway, to make a long story even longer - we have great news.

Nick

> is back, and he is BETTER than he was before. Everyone involved

in

> his therapy is just amazed. He is starting to use three and four

> word phrases, is flying through new complicated programs in his

> therapy, has calmed down considerably, socialibility is way up

> there. You name it - he has improved, even beyond what he was at

> before the regression. So what did we do? Well, it was a few

> things - Nick started GSE (grapefruit seed extract) at four drops

> with breakfast plus we started a low dose of really plain

acidolphus

> probiotic at 2 million units(we have built up to 4 million

units).

> This led to immediate improvements in his stools. But I think

the

> biggest puzzle piece was something I had not thought of: Nick

had

> finished off his Ibenedone (Co-Enzyme Q10) from Kirkman Labs back

in

> late November, and I had not ordered more, thinking it was not

really

> mentioned in any key protocols (I started it long ago just from a

> supplement schedule another mom was using), and it was so

expensive.

> It did not seem to be key in his supplement program. I have since

> found out that it DOES play a key part:

> - for one thing, it takes a really long time to build up in the

body

> to full effectiveness (and likewise to come down in levels when

you

> stop) SO stopping in November would not even show the effects for

a

> month or so.(which is when he started regressing)

> -helps to keep YEAST in check

> -helps to stop stimming

> -immune system support and many other things too

> Well, as a last ditch effort, we ordered more, and Nick has been

on

> it again for about 10 days now. Amazingly, his stimming is WAY

down

> just since the start of the Ibenodone- he will actually put

puzzle

> pieces in the puzzle again, instead of staring at them in his

hands.

> He follows his sister around again, doing everything she does.

His

> humor is back. His imaginative play is back. His imitation

skills

> are back. His verbal ability is stronger than it was before -

> picking up words we are not teaching him in therapy. Everyone is

so

> surprised. And I have not stopped thanking God! We have been on

a

> nightmare ride since early January, and I can honestly say we

seem to

> be through the worst of it. We ARE sending in a stool sample and

> urine sample to Great Plains next week to get to the bottom of

his

> issues with yeast and bacteria. They told me the Nystatin might

have

> made a bacteria problem worse if that was the problem and not

yeast.

> But we will not know until the results are in. WE have also sent

in

> hair samples to DDI in the last week.

>

> So anyway, to those who remember " worried mom " a month or so ago -

we

> are doing just awesome. Not to mention the fact that we did not

have

> to go back to GFCF diet. He eats everything in sight, including

> apples and peanut butter. (which are new additions that used to

send

> him stimmy) Yay enzymes! I wanted to make sure that anyone who

read

> our posts last month and thought maybe the effect of the enzymes

was

> wearing off - did not happen. They are working fabulously. The

> problem was elsewhere.

>

> Have a great week

>

>

>

>

>

[Guest guest]

> I think it would be nice if you could tell the parents over on

( groups) about your experience. I know they would appreciate it.

, I think a lot of the people from the A-M list are already members of this

board too These things go hand-in-hand and I think everybody

understood this. The board was mentioned many times on the A-M

board, so... I bet a lot of the members there are reading this already.

Ibedenone was also mentioned a few times there... but nobody said that it would

be that necessary, that it would make such difference...

I've read many good things about it too, about a month ago, which made me order

some (from Kirkman) to try it. I just had the package today, so... now I

am anxious I can't wait to see what's happening

Thank you, , for letting us know about your experience I was really happy

to read about Nick. It is weird but yesterday I was wondering how is

him. I was surprised to see your email.

Stay happy,

Valentina

[Guest guest]

Hi!!!!!!!! Valentina,

I just took 40 mg og Co Q 10 and gave my daughter also Co Q 10.

Enzymes are on the way.

Third day of 4th chelation round with good results. Feeling rather positive

today.

Cheers,

P.S. Where are you. Are you in Rumania?

Re: [ ] - Info on Idebenone (spelled it wrong

before)

> I think it would be nice if you could tell the parents over on

( groups) about your experience. I know they would

appreciate it.

, I think a lot of the people from the A-M list are already members of

this board too These things go hand-in-hand and I think everybody

understood this. The board was mentioned many times on the

A-M board, so... I bet a lot of the members there are reading this already.

Ibedenone was also mentioned a few times there... but nobody said that it

would be that necessary, that it would make such difference...

I've read many good things about it too, about a month ago, which made me

order some (from Kirkman) to try it. I just had the package today, so... now I

am anxious I can't wait to see what's happening

Thank you, , for letting us know about your experience I was really

happy to read about Nick. It is weird but yesterday I was wondering how is

him. I was surprised to see your email.

Stay happy,

Valentina

[Guest guest]

Hello,

CoQ10!!

I (mom of autistic kid) was suffering heavy hives nearly 7 months.

After GF/CF with my child, I developed this allergy against wheat and

milk. Not only that, everytime I tried new supplument, I suffer

mosquite bite like hives all over my body. During this 7 months, I

was constantly taking anti histamin pills. I consulted 3 different

doctors, nobody couold help, tried many supplments, no result.

I got sample of CoQ10 from Kirkman and tried.

No hives. Even forgot to take anti histamin pills, no hives as long

as I am on GF/CF. Doctor think it should be coincidence, since I

took them for few days only. He told me it should take a while

before it works. But now I am reading this message board, and

thinking it could be the one who saved me. Going to try on my kid

soon.

> > ,

> >

> > That is really wonderful to hear about your son. You had me

worried

> there for a time.

> >

> > I had actually thought about giving Co Q 10 to my daughter but

the

> pharmacist warned me off it. I should have listened to my

instincts.

> >

> > So let us know how much you gave your child.

> >

> > I was taking Co Q 10 for a while and felt really good on them.

> >

> > BTW whats the difference between CO Q 10 and Ibendone?

> >

> > Again I am thrilled for you. Thank God for small wonders!

> >

> >

> > [ ] Update on and his

regression

> >

> >

> > Hi group

> > Haven't posted in a while - been really busy around here!

For

> those

> > of you who don't remember, NIcholas was a success story on

here

> who

> > went for a bad regression after a trial of Nystatin went

terribly

> > wrong.

> >

> > Nick is 3.1 years old, and has been on many supplements since

age

> 22

> > months. We started Houston enzymes at age 2.10 (October

2001)

> after

> > 10 months of strict GFCF diet. Results were spectactular -

even

> > after we reintroduced gluten and casein into diet. The only

> problem

> > was that stools continue to be quite loose with a red ring

around

> > anus. We convinced our doctor to try Nystatin - we built up

> super

> > slowly to full dose, and added probiotics (ProbioGold)

Die-off

> (or

> > what we thought was die-off) was severe, although we stuck it

out

> for

> > 6 looonnng weeks. Nick was fading on us into severe autism

> (where he

> > never was before), and we finally jumped ship and stopped the

> > Nystatin - no improvement. Stopped the probiotics - no

> improvement.

> > We stopped all new supplements we had started - no

improvement.

> I

> > have never been so scared in my life. To have a child

regress

> like

> > that with no apparent cause. He was stimming out of control.

I

> was

> > worried it was a late reaction to the gluten and casein, but

the

> > thought of going back to the diet was horrendous to me. (but

we

> would

> > have if we had to) Nick was eating healthier than he ever had

> before,

> > largely because I would use one Breton wheat cracker in small

> pieces

> > each meal as reinforcers, and he would eat ANYTHING for a

little

> > piece. This regression lasted for about a month after

> discontinuing

> > the Nystatin and everything else new.

> >

> > Anyway, to make a long story even longer - we have great

news.

> Nick

> > is back, and he is BETTER than he was before. Everyone

involved

> in

> > his therapy is just amazed. He is starting to use three and

four

> > word phrases, is flying through new complicated programs in

his

> > therapy, has calmed down considerably, socialibility is way

up

> > there. You name it - he has improved, even beyond what he

was at

> > before the regression. So what did we do? Well, it was a

few

> > things - Nick started GSE (grapefruit seed extract) at four

drops

> > with breakfast plus we started a low dose of really plain

> acidolphus

> > probiotic at 2 million units(we have built up to 4 million

> units).

> > This led to immediate improvements in his stools. But I

think

> the

> > biggest puzzle piece was something I had not thought of:

Nick

> had

> > finished off his Ibenedone (Co-Enzyme Q10) from Kirkman Labs

back

> in

> > late November, and I had not ordered more, thinking it was

not

> really

> > mentioned in any key protocols (I started it long ago just

from a

> > supplement schedule another mom was using), and it was so

> expensive.

> > It did not seem to be key in his supplement program. I have

since

> > found out that it DOES play a key part:

> > - for one thing, it takes a really long time to build up in

the

> body

> > to full effectiveness (and likewise to come down in levels

when

> you

> > stop) SO stopping in November would not even show the effects

for

> a

> > month or so.(which is when he started regressing)

> > -helps to keep YEAST in check

> > -helps to stop stimming

> > -immune system support and many other things too

> > Well, as a last ditch effort, we ordered more, and Nick has

been

> on

> > it again for about 10 days now. Amazingly, his stimming is

WAY

> down

> > just since the start of the Ibenodone- he will actually put

> puzzle

> > pieces in the puzzle again, instead of staring at them in his

> hands.

> > He follows his sister around again, doing everything she

does.

> His

> > humor is back. His imaginative play is back. His imitation

> skills

> > are back. His verbal ability is stronger than it was before

-

> > picking up words we are not teaching him in therapy.

Everyone is

> so

> > surprised. And I have not stopped thanking God! We have

been on

> a

> > nightmare ride since early January, and I can honestly say we

> seem to

> > be through the worst of it. We ARE sending in a stool sample

and

> > urine sample to Great Plains next week to get to the bottom

of

> his

> > issues with yeast and bacteria. They told me the Nystatin

might

> have

> > made a bacteria problem worse if that was the problem and not

> yeast.

> > But we will not know until the results are in. WE have also

sent

> in

> > hair samples to DDI in the last week.

> >

> > So anyway, to those who remember " worried mom " a month or so

ago -

> we

> > are doing just awesome. Not to mention the fact that we did

not

> have

> > to go back to GFCF diet. He eats everything in sight,

including

> > apples and peanut butter. (which are new additions that used

to

> send

> > him stimmy) Yay enzymes! I wanted to make sure that anyone

who

> read

> > our posts last month and thought maybe the effect of the

enzymes

> was

> > wearing off - did not happen. They are working fabulously.

The

> > problem was elsewhere.

> >

> > Have a great week

> >

> >

> >

> >

> >