Re: Digest Number 477

[Guest guest]

Anne wrote:

>

>

>>I've been there and done that with a son who landed in ICU

>

Polly wrote:

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>

>That is terrible. I'm sorry that that happened. Your point is perhaps that

>

>with children with mito, you have to be much more cautious than with other

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>diseases, and that frequent monitoring of hormones is essential.

I don't mean to sound " mean " , but Polly, I don't think you get it. Some of

us are dying with this disease; and not JUST the children. Anne's boys have

Pearsons. Do you have any idea what that is??? My family has what presents

as MELAS/Kearns-Sayre. Are you familiar with this??? Have you any idea what

some of us go through to keep our kids alive; ourselves hopefully functioning

well enough to continue to tend to our kids?

Now don't get me wrong, I don't believe that prescriptions are always the

only choice or even necessarily the best choice. My family relies on

prescriptions, herbs, supplements, high end technology devices, as well as

surgically implanted devices. I use herbs extensively, but herbs are very

serious; prescriptions in other countries and used in place of prescriptions

in still yet some/other countries. I make mention of my herbal uses once in

a while, but I would be TERRIFIED to give real serious information on such as

this disease is MULTI-SYSTEM. This is not a passive fear either; I trial

EVERYTHING we take and the results can be repeatedly just as devastating with

some supplements as it can be incredibly beneficial with others. What we do

to help one system, may cause DEATH by virtue of how it affects another

system within the SAME individual. What is LIFE-SAVING for some (like

carnitor) can be lethal in others. It MUST be understood that not all

individuals have the same complex deficiencies, the same cause of their

complex deficiencies, and some don't have oxidative phosphorilative disease

at all; still other have fatty acid oxidative defects with some who have

both. There are other variants of diseases on this list as well with some

who have mito secondary to something else. This disease is so VARIABLE, that

virtually NO ONE has the exact same needs, even within the same families (I

won't bother to get into the reasons why). This is one reason why some

individuals are trying to point out that you really MUST be careful with what

you say.

Cheri

[Guest guest]

>This disease is so VARIABLE, that

> virtually NO ONE has the exact same needs, even within the same families

(I

> won't bother to get into the reasons why). This is one reason why some

> individuals are trying to point out that you really MUST be careful with

what

> you say.

>

I think that we have to count on ourselves to be able to filter information,

though Cheri. There used to be a list that made people " talk down " to

families with mito, because they couldn't understand things and just might

try something that didn't help, but hurt. That's so true, but if people

don't offer what has worked, and YES even in Polly's case where there is no

mito diagnosis, we'll never know what =might= work. Whether or not a child

also has PEarson's or MELAS may affect what you use (as a parent you should

know), but patients with either could (and have) also have yeast infections

and other things that might be improved with treatments suggested. I know

that many here have thyroid complications and for one, I am interested in

how the thyroid hormones are processed since our defect may be impacting it.

I would encourage people to research research research, and be careful how

you proceed, but never never never stop telling others what has worked.

Others need to be careful how =they=act= on what you say, certainly we want

everyone to feel free to say whatever they think might make a difference.

Other lists in the past have accused someone with good information of being

" too intelligent " or " talking over other';s heads " or " practising medicine

without a license " . I think this is good sharing.

JMHO

Kathy