Re: Testosterone/mito child

[Guest guest]

You might be surprised as to what is listed here...http://mitoresearch.org/diseaselist.html

Love, Gabby. :0)

http://stemcellforautism.blogspot.com/

"I know of nobody who is purely Autistic or purely neurotypical. Even God had some Autistic moments, which is why the planets all spin." ~ Jerry Newport

[Guest guest]

, a lot of things that our kids typically undergo are symptoms of

possible mito. Developmental regressions, failure to thrive, seizures,

food aversions/intolerences, unexplained vomiting, and it generally

has onset after illness. If you have more than one child with autism

it's another indicator. Remember, like autism a kid with mito disorder

may/may not display every symptom. There are often several variants of

most mito labels.

Because so many kids like mine had NO to little diagnostic lab tests

when they got sick, we just don't know how many kids with an autism

label may really have another condition. No testing = no data = no

definition. The more I read the more I really believe a good segment

of our autism population is actually a mitochondrial/metabolic disorder.

http://www.medicinenet.com/mitochondrial_disease/article.htm

What is Mitochondrial Myopathies?

.... The symptoms of mitochondrial myopathies include:

* muscle weakness or exercise intolerance,

* heart failure or rhythm disturbances,

* dementia,

* movement disorders,

* stroke-like episodes,

* deafness,

* blindness,

* droopy eyelids,

* limited mobility of the eyes,

* vomiting, and

* seizures.

The prognosis for these disorders ranges in severity from progressive

weakness to death. Most mitochondrial myopathies occur before the age

of 20, and often begin with exercise intolerance or muscle weakness.

During physical activity, muscles may become easily fatigued or weak.

Muscle cramping is rare, but may occur. Nausea, headache, and

breathlessness are also associated with these disorders.

http://www.umdf.org/site/c.dnJEKLNqFoG/b.3042169/

Depending on which cells are affected, symptoms may include loss of

motor control, muscle weakness and pain, gastro-intestinal disorders

and swallowing difficulties, poor growth, cardiac disease, liver

disease, diabetes, respiratory complications, seizures, visual/hearing

problems, lactic acidosis, developmental delays and susceptibility to

infection.

http://www.umdf.org/site/c.dnJEKLNqFoG/b.3042177/k.D869/fontfont.htm

(graphic, would not cut & paste but provides additional symptoms)

http://www.umdf.org/site/c.dnJEKLNqFoG/b.3042179/k.5799/Inheritance__Genetics.ht\

m#SporadicCases

Sporadic Cases — Where There Are No Affected Relatives

In the " real world " , in the majority (perhaps about 75%) of cases the

patient is the only family member affected with mitochondrial disease.

These cases are called " sporadic " , and present much difficulty in

answering the questions posed about regarding inheritance.

The first question is whether the problem is due to genetics,

environment, or some combination of the two. Certainly, the genetic

aspects of mitochondrial disease are well known and were briefly

summarized above. However, not all mitochondrial disease is primarily

genetic. For example, anti-retroviral medications used to treat

HIV/AIDS can damage mitochondria and cause symptoms due to resultant

energy failure. Removal of these drugs reverses the process and the

symptoms resolve. There are other environmental causes of

mitochondrial disease, and likely many that we do not know about.

In the opinion of this author, most mitochondrial diseases are

probably both genetic AND environmental in origin. Even in the case of

anti-retroviral medications, thousands of individuals have no problem

on these drugs while only a handful do. Likely, there are genetic

reasons for the high susceptibility to these drugs in an unlucky few -

a genetic predisposition of an " environmental " disease. On the other

hand, in MELAS, which clearly is primarily genetic in origin,

neurological deterioration often occurs during a viral illness and/or

fasting - an environmental trigger of a " genetic " disease.

The second question is: If genetic, was the mutation inherited? The

answer is usually yes, but not always. New mutations do exist. In

particular, deletions (missing areas) of mtDNA tend to be new

mutations not present in the mother or siblings. However, deletions

with duplications are often inherited, and some duplications are hard

to detect.

What this all means is that there are very few answers in most cases

where only one person in a family has mitochondrial disease. The

condition probably is genetic, and it may or may not be inherited.

Either the nuclear or mitochondrial DNA could be involved. Inheritance

is probably autosomal recessive, maternal or sporadic (no

inheritance), but not necessarily.

Based on many families, some groups give an estimated recurrence risk

for mitochondrial disease (chance that each additional child of the

same two parents will be somehow affected) of 10-15%. This is probably

a reasonable rough estimate, but you should discuss the probability of

recurrence for your family with a genetics counselor familiar with

mitochondrial disease.

- Written by Boles, M.D. and Terri Mason

>

> Hi Debi,

> what are the signs a child might be mito.. i'm guessing mito

> is 'mitocondrial dysfunction/disease'.. this has been bought up

> before.. but i'm at a loss at the autism connection.. any advise would

> be apprciated..

>

[Guest guest]

Thanks for that info.. i have had a read, but have i missed how it is

diagnosed?

I'm sure this is not my son, but i did read in one of his results

that he had a carnitine deficiency, causing a lack of breakdown in

EFA's..and since the introduction of carnitine in June,.. this

problem has been resolved.. so this possible mito dysfunction(as it

was stated) is in the back of my mine..

thanks.. now i have butterflies in my stomach..ahh.

> >

> > Hi Debi,

> > what are the signs a child might be mito.. i'm guessing mito

> > is 'mitocondrial dysfunction/disease'.. this has been bought up

> > before.. but i'm at a loss at the autism connection.. any advise

would

> > be apprciated..

> >

>

[Guest guest]

The primary way it's diagnosed is through a tissue biopsy. Skin,

organs, and muscle may be used, a small sample is taken. However,

many, many tests are generally done prior to the biopsy. Sometimes

enough labs/behaviors fit for a doctor to feel reasonably sure it's a

particular type. Others even undergo the tissue biopsy but still have

inconclusive findings. These are likely suffering from some form but

it's either an unknown variant or perhaps an undiscovered type.

I've also heard a thought that it's not quite the level of the known

mito disorders, that instead it's considered a lesser dysfunction.

That is likely where a supplement and/or dietary restriction helps

resolve the problem. It doesn't really cure it but manages the

condition so well it feels resolved. Sort of like a diabetic who with

diet, medication, and lifestyle changes loses many of the problems but

still has the underlying condition.

Some of the other classic lab findings are elevated organic acids or

an unusual elevation in an amino acid, or even an unusual ratio among

various amino acids. Lactate, pyruvate, and ammonia can also be

elevated in mito disease. Carnitine can be either unusually low or

high. Also other vitamin deficiencies may occur, or worsen the

condition. That's probably why mb-12 shots and other supplements help

so many kids with autism.

Debi

[Guest guest]

Debi, if i forwarded the results of his tests that were done at

Genova labs.. keeping in mind it was done about 18 months ago, could

you get some idea from that.. some of the markers were high, some

within range..

The physial descriptions of mito dont seem to relate to Ben, and his

improvements over the last 12 months has been great..

I'm now not sure what to do..

PS; i really dont think my child is autistic at all.. he doesnt seem

to fit into most of the typical traits anymore.. but i have always

been worried it is something more sinister.. not to sound so harsh..

unless his slow improvements via biomedical are throwing me off now..

AHHHH..

>

> The primary way it's diagnosed is through a tissue biopsy. Skin,

> organs, and muscle may be used, a small sample is taken. However,

> many, many tests are generally done prior to the biopsy. Sometimes

> enough labs/behaviors fit for a doctor to feel reasonably sure it's

a

> particular type. Others even undergo the tissue biopsy but still

have

> inconclusive findings. These are likely suffering from some form but

> it's either an unknown variant or perhaps an undiscovered type.

>

> I've also heard a thought that it's not quite the level of the known

> mito disorders, that instead it's considered a lesser dysfunction.

> That is likely where a supplement and/or dietary restriction helps

> resolve the problem. It doesn't really cure it but manages the

> condition so well it feels resolved. Sort of like a diabetic who

with

> diet, medication, and lifestyle changes loses many of the problems

but

> still has the underlying condition.

>

> Some of the other classic lab findings are elevated organic acids or

> an unusual elevation in an amino acid, or even an unusual ratio

among

> various amino acids. Lactate, pyruvate, and ammonia can also be

> elevated in mito disease. Carnitine can be either unusually low or

> high. Also other vitamin deficiencies may occur, or worsen the

> condition. That's probably why mb-12 shots and other supplements

help

> so many kids with autism.

>

> Debi

>

[Guest guest]

you have to be in a metabolic crash to run the tests, they can't be done when healthy, that is part of the trick

Recovering from Autism is a marathonNOT a sprint, but FULLY possible!Read more about it on my BLOGs athttp://www.myspace.com/christelkinghttp://foggyrock.com/MyPage/recoveringwisheshttp://www.facebook.com/profile.php?id=677063169

Re: Testosterone/mito child

The primary way it's diagnosed is through a tissue biopsy. Skin,organs, and muscle may be used, a small sample is taken. However,many, many tests are generally done prior to the biopsy. Sometimesenough labs/behaviors fit for a doctor to feel reasonably sure it's aparticular type. Others even undergo the tissue biopsy but still haveinconclusive findings. These are likely suffering from some form butit's either an unknown variant or perhaps an undiscovered type.I've also heard a thought that it's not quite the level of the knownmito disorders, that instead it's considered a lesser dysfunction.That is likely where a supplement and/or dietary restriction helpsresolve the problem. It doesn't really cure it but manages thecondition so well it feels resolved. Sort of like a diabetic who withdiet, medication, and lifestyle changes loses many of the problems butstill has the underlying condition. Some of the other classic lab findings are elevated organic acids oran unusual elevation in an amino acid, or even an unusual ratio amongvarious amino acids. Lactate, pyruvate, and ammonia can also beelevated in mito disease. Carnitine can be either unusually low orhigh. Also other vitamin deficiencies may occur, or worsen thecondition. That's probably why mb-12 shots and other supplements helpso many kids with autism.Debi

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[Guest guest]

Sorry for sounding uneducated with this question.. but how do i know

if he is having a metabolic crash..

>

> you have to be in a metabolic crash to run the tests, they can't be

done when healthy, that is part of the trick

>

> Recovering from Autism is a marathon

> NOT a sprint, but FULLY possible!

> Read more about it on my BLOGs at

> http://www.myspace.com/christelking

> http://foggyrock.com/MyPage/recoveringwishes

> http://www.facebook.com/profile.php?id=677063169

>

> Re: Testosterone/mito child

>

>

> The primary way it's diagnosed is through a tissue biopsy. Skin,

> organs, and muscle may be used, a small sample is taken. However,

> many, many tests are generally done prior to the biopsy. Sometimes

> enough labs/behaviors fit for a doctor to feel reasonably sure

it's a

> particular type. Others even undergo the tissue biopsy but still

have

> inconclusive findings. These are likely suffering from some form

but

> it's either an unknown variant or perhaps an undiscovered type.

>

> I've also heard a thought that it's not quite the level of the

known

> mito disorders, that instead it's considered a lesser dysfunction.

> That is likely where a supplement and/or dietary restriction helps

> resolve the problem. It doesn't really cure it but manages the

> condition so well it feels resolved. Sort of like a diabetic who

with

> diet, medication, and lifestyle changes loses many of the

problems but

> still has the underlying condition.

>

> Some of the other classic lab findings are elevated organic acids

or

> an unusual elevation in an amino acid, or even an unusual ratio

among

> various amino acids. Lactate, pyruvate, and ammonia can also be

> elevated in mito disease. Carnitine can be either unusually low or

> high. Also other vitamin deficiencies may occur, or worsen the

> condition. That's probably why mb-12 shots and other supplements

help

> so many kids with autism.

>

> Debi

>

>

>

>

>

>

> --------------------------------------------------------------------

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>

>

>

> No virus found in this incoming message.

> Checked by AVG - http://www.avg.com

> Version: 8.0.173 / Virus Database: 270.7.5/1702 - Release Date:

10/1/2008 9:05 AM

>

[Guest guest]

they get really sick really fast, and NEED to be in the hospital, sugar crashes fast ect

Recovering from Autism is a marathonNOT a sprint, but FULLY possible!Read more about it on my BLOGs athttp://www.myspace.com/christelkinghttp://foggyrock.com/MyPage/recoveringwisheshttp://www.facebook.com/profile.php?id=677063169

Re: Testosterone/mito child> > > The primary way it's diagnosed is through a tissue biopsy. Skin,> organs, and muscle may be used, a small sample is taken. However,> many, many tests are generally done prior to the biopsy. Sometimes> enough labs/behaviors fit for a doctor to feel reasonably sure it's a> particular type. Others even undergo the tissue biopsy but still have> inconclusive findings. These are likely suffering from some form but> it's either an unknown variant or perhaps an undiscovered type.> > I've also heard a thought that it's not quite the level of the known> mito disorders, that instead it's considered a lesser dysfunction.> That is likely where a supplement and/or dietary restriction helps> resolve the problem. It doesn't really cure it but manages the> condition so well it feels resolved. Sort of like a diabetic who with> diet, medication, and lifestyle changes loses many of the problems but> still has the underlying condition. > > Some of the other classic lab findings are elevated organic acids or> an unusual elevation in an amino acid, or even an unusual ratio among> various amino acids. Lactate, pyruvate, and ammonia can also be> elevated in mito disease. Carnitine can be either unusually low or> high. Also other vitamin deficiencies may occur, or worsen the> condition. That's probably why mb-12 shots and other supplements help> so many kids with autism.> > Debi> > > > > > > --------------------------------------------------------------------> > > > No virus found in this incoming message.> Checked by AVG - http://www.avg.com > Version: 8.0.173 / Virus Database: 270.7.5/1702 - Release Date: 10/1/2008 9:05 AM>

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[Guest guest]

likly yes.....getting sick would get serious, But some of it can show different ways as well. if he has been generally healthy you likely have nothing to worry about

Recovering from Autism is a marathonNOT a sprint, but FULLY possible!Read more about it on my BLOGs athttp://www.myspace.com/christelkinghttp://foggyrock.com/MyPage/recoveringwisheshttp://www.facebook.com/profile.php?id=677063169

Re: Testosterone/mito child> > > The primary way it's diagnosed is through a tissue biopsy. Skin,> organs, and muscle may be used, a small sample is taken. However,> many, many tests are generally done prior to the biopsy. Sometimes> enough labs/behaviors fit for a doctor to feel reasonably sure it's a> particular type. Others even undergo the tissue biopsy but still have> inconclusive findings. These are likely suffering from some form but> it's either an unknown variant or perhaps an undiscovered type.> > I've also heard a thought that it's not quite the level of the known> mito disorders, that instead it's considered a lesser dysfunction.> That is likely where a supplement and/or dietary restriction helps> resolve the problem. It doesn't really cure it but manages the> condition so well it feels resolved. Sort of like a diabetic who with> diet, medication, and lifestyle changes loses many of the problems but> still has the underlying condition. > > Some of the other classic lab findings are elevated organic acids or> an unusual elevation in an amino acid, or even an unusual ratio among> various amino acids. Lactate, pyruvate, and ammonia can also be> elevated in mito disease. Carnitine can be either unusually low or> high. Also other vitamin deficiencies may occur, or worsen the> condition. That's probably why mb-12 shots and other supplements help> so many kids with autism.> > Debi> > > > > > > --------------------------------------------------------------------> > > > No virus found in this incoming message.> Checked by AVG - http://www.avg.com > Version: 8.0.173 / Virus Database: 270.7.5/1702 - Release Date: 10/1/2008 9:05 AM>

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[Guest guest]

We never tested testerone levels but my 3 yrs old used to have approx

15 erections a day he was very bothered by it and of course it was

becomming a social issue.We started Spirolactone for high Neopterine

levels and within 2 months the erections were gone ..I know spiro helps

with terterone levels also. We have had no bad side effects at all from

spiro,,