Re: Vitamin K-3, Questions about autonomic dysfunction and B vitamins.

[Guest guest]

Becky -

Thanks for the info on K3. I will look into it for , I think!!!

And don't feel that you don't belong if no g-tube. None of our kids are

exactly the same. is tube fed, but he doesn't have some of the issues

that some of the other children on the list have. With mito, one of the most

confusing aspects is the fact that there is a wide degree of variability

between patients, even those with exactly the same defect or diagnosis . . .

even among patients from the same family.

Autonomic dysfunction refers to when the autonomic nervous system is not

working properly. It is responsible for the things our body does

automatically without thinking about it . . . breathing, heart beating,

digestion, temperature regulation, etc. etc. sweats profusely at times

.. . . suddenly, seemingly for no reason. I have been told that it is an

autonomic issue.

I know what you mean about wishing you had a guidebook. Me, too!!! It would

make life a good bit easier, huh? Sounds like you are doing a great job,

though, at trying to become a well-informed parent. Hang in there!!!!

Kathy

mom to and (Complex I and III)

[Guest guest]

In a message dated 1/26/00 6:48:57 PM Pacific Standard Time,

KCorley309@... writes:

<< Thanks for the info on K3. >>

Would someone please forward this info to me? I think I deleted it. :-(

Thanks

[Guest guest]

Kathy,

Thanks so much for the information and support. I sure could use it at times.

Avery used to start sweating really badly for no reason at all. Usually it was

when he was sleeping and he would have sweat dripping off his forehead with

beads of sweat everywhere. He was always wet on his back when we would pick him

up from a nap. He seems to be better now at least with that issue.

Avery has the cold that both my husband and I currently have and I get so

worried about him when he is sick. Every little thing he does makes me think he

is in danger becuase of his mito situation.

I just keep praying and reading and watching and praying some more. He has

constant ear infections and that really bothers him and our whole family and

then it seems like he doesn't hear well and quits verbalizing for awhile and on

and on and on.

He has been free of illness for almost two months which I do believe is a

record. I should clarify that statement I guess ... free from a cold or the flu.

When Avery is sick he seems to lose whatever energy he does and just wants to

lay on the ground and watch Teletubbies. I am not an abusive mom with the TV but

he kicks and squeals and laughs and carries on with the 'tubbies so much that I

cannot help but just let him enjoy it.

Thanks for letting me in our your little community. It sure feels good to read

all of the posts all day long and know that I am not alone in this struggle.

Thanks again.

Becky

PS ... I guess you are right that even though we do not have kids with the exact

same symptoms we can all relate in one way or another with having a child and/or

children that we love with all of our heart and with needing to provide that

child with the best treatment possible. We are all moms in a struggle but, how

does that go? ... United We Stand or something like that.

Thanks again.

At 09:43 PM 1/26/2000 EST, you wrote:

>From: KCorley309@...

>

>Becky -

>

>Thanks for the info on K3. I will look into it for , I think!!!

>

>And don't feel that you don't belong if no g-tube. None of our kids are

>exactly the same. is tube fed, but he doesn't have some of the issues

>that some of the other children on the list have. With mito, one of the most

>confusing aspects is the fact that there is a wide degree of variability

>between patients, even those with exactly the same defect or diagnosis . . .

>even among patients from the same family.

>

>Autonomic dysfunction refers to when the autonomic nervous system is not

>working properly. It is responsible for the things our body does

>automatically without thinking about it . . . breathing, heart beating,

>digestion, temperature regulation, etc. etc. sweats profusely at times

>. . . suddenly, seemingly for no reason. I have been told that it is an

>autonomic issue.

>

>I know what you mean about wishing you had a guidebook. Me, too!!! It would

>make life a good bit easier, huh? Sounds like you are doing a great job,

>though, at trying to become a well-informed parent. Hang in there!!!!

>

>Kathy

>mom to and (Complex I and III)

>

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

[Guest guest]

Becky,

Don't feel bad about letting Avery watch Teletubbies too

much! My daughter loves Barney and at the times of her life

when she has not been doing well, Barney videos have been

the only things that can cause her to laugh or even smile.

I would let her watch 100 hours of Barney for a smile...I'm

so grateful that anything can reach her at those times!

--

The s

, , Adelaine and Baby?

Ann Arbor, MI

http://www.mich/com/~jaj