Re: Lori and anyone on vitamins

February 17, 1998

Lori, I am feeling totally overwhelmed and at my wits ends too. I have this

4 yr old grandson here who was suicidal from exposure to industrial

pollution as they live by some pressure treated wood plants, etc. . He is

now not suicidal (been here a week) but so extreme ADHD I finally took

valium the other evening to not be abusive or be chked into the hospital

with a nervous breakdown. The worst part of this mess (I will have him until

they relocate in several weeks) is the 7 yr old I'm raising and (the 4

yr old) are like oil and water. I see now Kody needs the counseling big time

for his abandonment issues which he never got help for. He is so afraid we

will keep . (There are a lot of psycological details to this picture.)

I went for Ritalin finally for but then remembered now that he is old

enough to swallow pills we could try the lipoic and B1, he did well on the

CoQ10 and the grapeseed extract until he got to that house. Now if I can

only hold out for 3-4 days until this starts working if it works. Otherwise

we will have to do the Ritalin at least for now.

HEY-just hit me! Since you are describing the classic ADHD symtpoms for

Alycia do you think you could try the Ritalin for her???

Anyway, 's Dr is emailing Dr. Cohen for testing procedures for the mito

for as he agrees our family sounds mito to him. He is an MD but into

the natural too. His wife sells Usana nutrients and they have a CoQ10 with

lipoic in it in a fat base capsule-has anyone ever heard of that brand??

Well, they are up. I have counseling this morning for me-boy, do I need it.

I will sit there and cry for my hour. S.

Re: Lori and anyone on vitamins

>

>Hi ,

>

>It seems that Alycia looks physically better since I put her back on

Carnitor because her eyes are more

>open and she seems more alert. However, along with this alertness has come

aggressiveness, poor

>attention, scattered retrieval skills and such. I could be the month. She

always has a bad time in

>February. She has been urinarily continent for months but this past week

she is wetting herself again.

>Who knows if it is the vitamins or what it is. I just don't know what to

do anymore.

>

>Lori

>

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

>

February 17, 1998

Lori, I don't remember exactly the mito defect Alycia has but for Tylynn the

lipoic is what stops his aggression, clears his mind-helps with the learning

disabilities. he pays more attention, he is more cooperative, and not so

paranoid. He is 8. S.

Re: Lori and anyone on vitamins

>

>Hi ,

>

>It seems that Alycia looks physically better since I put her back on

Carnitor because her eyes are more

>open and she seems more alert. However, along with this alertness has come

aggressiveness, poor

>attention, scattered retrieval skills and such. I could be the month. She

always has a bad time in

>February. She has been urinarily continent for months but this past week

she is wetting herself again.

>Who knows if it is the vitamins or what it is. I just don't know what to

do anymore.

>

>Lori

>

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

>

February 19, 1998

Alice, you are right on the dosage so who sells the CoQ10 gel in a dosage

that will help us and what do I tell the Dr. about the dosage and

needs it for her heart too. She says even if she does need surgery now she

knows she couldn't withstand it, is willing to try anything else. I thought

Fred Meyers sold the gel but no. Anyone help me here? S.

Re: Lori and anyone on vitamins

>>

>>>

>>>Hi ,

>>>

>>>It seems that Alycia looks physically better since I put her back on

>>Carnitor because her eyes are more

>>>open and she seems more alert. However, along with this alertness has

>come

>>aggressiveness, poor

>>>attention, scattered retrieval skills and such. I could be the month.

>She

>>always has a bad time in

>>>February. She has been urinarily continent for months but this past week

>>she is wetting herself again.

>>>Who knows if it is the vitamins or what it is. I just don't know what to

>>do anymore.

>>>

>>>Lori

>>>

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

>>>

February 19, 1998

Lori, I know what you mean and I am not interested in Disney land or Disney

World, etc. either. Husband always wants me to go to Reno with him sometime

and I HATE it, the noise and filth and people-yuk! I'm getting to where

hearing other people's kids in stores is even driving me nuts-I'm sick of

kids screaming and whining and crying and yelling.

Soon you feel like you can't get enough oxygen with so many people around

too.

spent the nite at his home tonight but I will get him back tomorrow

afternoon and we hope that amt. of chemical exposure won't hurt him. He

seems to be doing a bit better on the lipoic but it's only 3 days at 200mg

daily with 100mg B1. I'm needing the CoQ10 gel for him and .

S.

Re: Lori and anyone on vitamins

>

>Hi ,

>

>we are trying a more Holistic approach. Alycia has started Sensory

Integration therepy to help be less

>sensory defensive, help her find better outlets for sensory input besides

hitting, and to teach her coping

>mechanisms when she is getting aggitated.

>

>We think it is sensory defensiveness for several reasons: she avoids

crowded areas, hits more when she is

> " crowed " , she covers her ears when it is noisy, she seldom plays with other

children (she does parallel

>play) perhaps to avoid being jostled, she does not feel pain when she bumps

something...it is almost as if

>she likes it, and she despised being touched or rubbed gently.

>

>When she gets bumped over and over, it is thought that her immature nervous

system registers this as an

>act of aggression thus she lashes out. She may also not realize that

hitting hurts since she doesn't feel

>pain easily.

>

>Hopefully the Sensory Integration will help her.

>

>Personally, I can relate. Jeff and I went to a popular restraurant on a

date one night and had to wait in

>the walkway which was very small. I established my " space " as I usually do

but no matter where I stood I

>got bumped or had to shift my position to avoid being bumped. After being

continually bumped into I got

>more and more aggravated to the point that I was clenching my fists and

teeth ready to pound the next

>person who bumped me. I begged my husband for us to leave and go someplace

less crowded as I couldn't

>take it anymore. I finally got so heated up that I just walked out with

out him. He soon followed and

>after yelling at me for my ridicuous behavior he calmed down and we found a

nice, quiet, peaceful

>restraurant to eat in. You wouldn't catch me in a crowded bar for all the

tea in China. I just can't

>take it. You have to live this to understand. Fortunately, I know enough

not to hit people....we have

>somehow teach this to Alycia....teach her to walk away and/or establish her

" space " where she won't get

>jostled.

>

>BTW, Jeff wanst to take us all to Disney World. I am absolutely dreading

this! It is everything I hate

>all wrapped into one package: crowds, heat and long lines! I don't think

Alycia will do we either but he

>says I'm nuts.

>

>Lori

>

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

>

February 19, 1998

Lori, today I lost it right off the get go when was so good and Kody

was so bad. I swear the kids plan it behind my back and take turns being

hellions so I never get a break but they do (it's hard work being a little

rat)! So I drove Kody to school (sat out in the car with it running telling

him I was driving off soon-get dressed and out there) and took to his

mom to get ready and on the school bus from her house and told her I

wouldn't watch her other one, Andy.

On the way there told me he misses his family but is afraid of the

chemicals there and I reassured him we had given him lots of vitamins and he

could be there for a short while and he would be OK. His parents are finding

another safe home so they can be a family again. He says then we will live

happily ever after. I wanted to cry-it's all any of us want, isn't it??

I went to a 2nd hand store and tried on some clothes, ran errands, and came

home for 2 hrs of 3 days worth of dishs. I played MY music loud, cut my hair

short (good job if I say so myself-permed it last week too). and I

had some good phone laughs about our family. Decided we should be a group

study of some sort. We need a triage of medical Dr.s, shrinks, and addictive

counselours. We are a large enough group of sickies to have our own support

group!

We told her husband, yes, other families have problems too but many of them

identify, admit, and get help for them and actually make changes. All we

want is to be a normal family living normal lives. I told Kody on the way to

school some families actually don't eat dessert for breakfast, and the kids

get up and dress for school and catch the bus, they don't yell and scream

and kick, don't destroy everything all the time, the mom's even get to go to

the bathroom when they need to!!

Sarcasm sometimes keeps us going. Hope you all understand how gone I am at

this point and get this sick sense of humor-serious but laughing so you

don't cry or go off the deep end (think I have anyway but still laughing and

we keep on keeping on................. S.

Re: Lori and anyone on vitamins

>>

>> >

>> >Hi ,

>> >

>> >It seems that Alycia looks physically better since I put her back on

>> Carnitor because her eyes are more

>> >open and she seems more alert. However, along with this alertness has

come

>> aggressiveness, poor

>> >attention, scattered retrieval skills and such. I could be the month.

She

>> always has a bad time in

>> >February. She has been urinarily continent for months but this past

week

>> she is wetting herself again.

>> >Who knows if it is the vitamins or what it is. I just don't know what

to

>> do anymore.

>> >

>> >Lori

>> >

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

>> >

April 17, 1998

Alice, In regards to this old post, did you ever get any reply from Usana on

increasing the dose of CoQ10 available? My Dr.s wife sells Usana and he

keeps encouraging me to get the CoQ10 and insisting that even tho it is a

low dose it is so bioavailable it doesn't matter. What do you or anyone else

on this list think? S.

Re: Lori and anyone on vitamins

>

>,

>

>I am waiting for a package from Usana as I am interested in their product.

>You are correct, they do have CoQ10 with Alpha Lipoic but the mg of the

>Coq10 is only 10 so we would have to consume an awful lot of it to work for

>the Mito victims. I have a request in for the possibility of an increase

in

>the dosage and have related the needs of our group. I am expecting a reply

>from them anytime now. Alice

>

April 18, 1998

Alice, I was remembering that many on this list said using the gel type you

didn't have to use as much but I guess we still would need a lot more than

Usana offers, huh?

My Dr. will not believe that just like any person who gets into the

multi-level selling stuff and gets so " sold " themselves on what they have to

offer and they want to convince you that they have the perfect thing.

Thanks for your response. S.

Re: Lori and anyone on vitamins

>>

>>>

>>>,

>>>

>>>I am waiting for a package from Usana as I am interested in their

product.

>>>You are correct, they do have CoQ10 with Alpha Lipoic but the mg of the

>>>Coq10 is only 10 so we would have to consume an awful lot of it to work

>for

>>>the Mito victims. I have a request in for the possibility of an increase

>>in

>>>the dosage and have related the needs of our group. I am expecting a

>reply

>>>from them anytime now. Alice

>>>

>>

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

>>HOW YA FEELIN'? Find out with your free Personal Health Report.

>> It's easy, it's fun, it's confidential and it's free.

>> http://www.onelist.com/ad/ivillage1

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

>>Brought to you by www.imdn.org - an on-line support group for those

>affected by mitochondrial disease.

>>

>

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

>You can now easily share photos and documents with your fellow list members

>http://www.ONElist.com

>Check out our homepage for details on how to use our new shared files

feature!

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

>Brought to you by www.imdn.org - an on-line support group for those

affected by mitochondrial disease.

>

April 18, 1998

Thank you Laurie. S.

Re: Lori and anyone on vitamins

>

>-

>

>I have taken the liquid CoQ and found that it didn't last very long, but

did provide improvement. I then

>started the gelcap type and didn't see the same improvement. My lastest

experiment was to take about 1/5

>to 1/4 of the total in the liquid and the remainder in gelcap form. This

was definitely an improvement. I

>still dose 4 times a day. I had less pain, less stiffness, and more

strength (still not normal, but

>better) and my breathing was better. I ran out of the liquid and everything

went back to the gelcap only

>way. I have more liquid ordered (Vitamin World) and will be using the

combination from now on. I'm still

>taking the same amount (10mg/kilo of body weight). I even hold the liquid

in my mouth so some of it is

>hopefully absorbed sublingually.

>

>Laurie

>

>> Alice, I was remembering that many on this list said using the gel type

you

>> didn't have to use as much but I guess we still would need a lot more

than

>> Usana offers, huh?

>

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

>Looking for a new hobby? Want to make a new friend?

>http://www.ONElist.com

>Come join one of the 115,000 e-mail communities at ONElist!

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

>Brought to you by www.imdn.org - an on-line support group for those

affected by mitochondrial disease.

>

February 17, 1999

,

I am waiting for a package from Usana as I am interested in their product.

You are correct, they do have CoQ10 with Alpha Lipoic but the mg of the

Coq10 is only 10 so we would have to consume an awful lot of it to work for

the Mito victims. I have a request in for the possibility of an increase in

the dosage and have related the needs of our group. I am expecting a reply

from them anytime now. Alice

Re: Lori and anyone on vitamins

>

>>

>>Hi ,

>>

>>It seems that Alycia looks physically better since I put her back on

>Carnitor because her eyes are more

>>open and she seems more alert. However, along with this alertness has

come

>aggressiveness, poor

>>attention, scattered retrieval skills and such. I could be the month.

She

>always has a bad time in

>>February. She has been urinarily continent for months but this past week

>she is wetting herself again.

>>Who knows if it is the vitamins or what it is. I just don't know what to

>do anymore.

>>

>>Lori

>>

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

>>

February 17, 1999

Hi ,

we are trying a more Holistic approach. Alycia has started Sensory Integration

therepy to help be less

sensory defensive, help her find better outlets for sensory input besides

hitting, and to teach her coping

mechanisms when she is getting aggitated.

We think it is sensory defensiveness for several reasons: she avoids crowded

areas, hits more when she is

" crowed " , she covers her ears when it is noisy, she seldom plays with other

children (she does parallel

play) perhaps to avoid being jostled, she does not feel pain when she bumps

something...it is almost as if

she likes it, and she despised being touched or rubbed gently.

When she gets bumped over and over, it is thought that her immature nervous

system registers this as an

act of aggression thus she lashes out. She may also not realize that hitting

hurts since she doesn't feel

pain easily.

Hopefully the Sensory Integration will help her.

Personally, I can relate. Jeff and I went to a popular restraurant on a date

one night and had to wait in

the walkway which was very small. I established my " space " as I usually do but

no matter where I stood I

got bumped or had to shift my position to avoid being bumped. After being

continually bumped into I got

more and more aggravated to the point that I was clenching my fists and teeth

ready to pound the next

person who bumped me. I begged my husband for us to leave and go someplace less

crowded as I couldn't

take it anymore. I finally got so heated up that I just walked out with out

him. He soon followed and

after yelling at me for my ridicuous behavior he calmed down and we found a

nice, quiet, peaceful

restraurant to eat in. You wouldn't catch me in a crowded bar for all the tea

in China. I just can't

take it. You have to live this to understand. Fortunately, I know enough not

to hit people....we have

somehow teach this to Alycia....teach her to walk away and/or establish her

" space " where she won't get

jostled.

BTW, Jeff wanst to take us all to Disney World. I am absolutely dreading this!

It is everything I hate

all wrapped into one package: crowds, heat and long lines! I don't think

Alycia will do we either but he

says I'm nuts.

Lori

February 17, 1999

Hi LInda,

I'm not ignoring you...I am waiting for enough free time to digest you post

carefully. I will answer you

as soon as I can.

Hugs!!!!!

Lori

wrote:

>

> Lori, I am feeling totally overwhelmed and at my wits ends too. I have this

> 4 yr old grandson here who was suicidal from exposure to industrial

> pollution as they live by some pressure treated wood plants, etc. . He is

> now not suicidal (been here a week) but so extreme ADHD I finally took

> valium the other evening to not be abusive or be chked into the hospital

> with a nervous breakdown. The worst part of this mess (I will have him until

> they relocate in several weeks) is the 7 yr old I'm raising and (the 4

> yr old) are like oil and water. I see now Kody needs the counseling big time

> for his abandonment issues which he never got help for. He is so afraid we

> will keep . (There are a lot of psycological details to this picture.)

> I went for Ritalin finally for but then remembered now that he is old

> enough to swallow pills we could try the lipoic and B1, he did well on the

> CoQ10 and the grapeseed extract until he got to that house. Now if I can

> only hold out for 3-4 days until this starts working if it works. Otherwise

> we will have to do the Ritalin at least for now.

>

> HEY-just hit me! Since you are describing the classic ADHD symtpoms for

> Alycia do you think you could try the Ritalin for her???

>

> Anyway, 's Dr is emailing Dr. Cohen for testing procedures for the mito

> for as he agrees our family sounds mito to him. He is an MD but into

> the natural too. His wife sells Usana nutrients and they have a CoQ10 with

> lipoic in it in a fat base capsule-has anyone ever heard of that brand??

>

> Well, they are up. I have counseling this morning for me-boy, do I need it.

> I will sit there and cry for my hour. S.

>

> Re: Lori and anyone on vitamins

>

> >

> >Hi ,

> >

> >It seems that Alycia looks physically better since I put her back on

> Carnitor because her eyes are more

> >open and she seems more alert. However, along with this alertness has come

> aggressiveness, poor

> >attention, scattered retrieval skills and such. I could be the month. She

> always has a bad time in

> >February. She has been urinarily continent for months but this past week

> she is wetting herself again.

> >Who knows if it is the vitamins or what it is. I just don't know what to

> do anymore.

> >

> >Lori

> >

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

> >

February 19, 1999

HI ,

I really don't know what to tell you except that I am glad I am not you. I am

glad that you are at least

seeing a therepist but more importantly, are you taking time out just for you?

That is so important. My

husband sends me out of the house even if it is to just veg out in the local

library all by myself. It

helps both of us because it keeps me in a good mood. You may want to consider

this.

Take care,