Re: Digest Number 1007

March 23, 2001

Dear Ruth,

Thanks for the response. We had an ELISA test done which showed sensitivity

to peanuts and canola oil so we use neither. We rarely used either before

the test. My son does not eat mustard and never has. So where do the long

chains come from if he's not ingesting them? Is his body producing too

many? (Isn't that what happens in the leuko-dystrophys?) Are there signs

that indicate VLCFA's may be a problem? Or should I just have him tested for

this because he's on the spectrum?

A month after starting CLO, my son would vomit it back up so we discontinued

it. We are on the rotation diet and I feel we might have made him sensitive

to it by administering it daily. He is also on evening primrose and flax.

I just hope that we are not starting food sensitivities here. Maybe I'll

rotate (or will that really screw up the balance?) Thanks for all your help.

N.

,

I will answer as best I can from my readings, my notes from conferences I

have attended, and what we are doing with our own son through our physician.

No, you cannot get rid of a build up long chain fatty acids through

balancing

the omega 3's and 6's. You have to eliminate as much of the source as

possible and burn them off through your body's metabolism (through

oxidation). The problem is many of our kids' metabolism is really screwed up

and they can't break things down right. The very long chain fatty acid

buildup is the result of suppressed beta oxidation (in other words,

decreased

cellular metabolism). This build up of VLCFA's also suppresses the body's

ability to make the prostaglandins. The body can make very long chain fatty

acids (unlike the essential fatty acids which your body cannot make and you

have to get through ingestion). Consuming the VLCFA's, especially when you

you can't burn them off, can also be stressful to the liver and brain. The

things really high in long chain fatty acids are canola oil, peanut oil and

peanut butter and mustard, so you want to eliminate those, and this will

greatly help the problem. Also, you would want to do other things to

maximize

your body's metabolism- eating right (good nutrition) and not using anything

that might harm this process including drugs. (Phew, I hope I explained all

that O.K.- sometimes I get carried away. Since I'm a nurse, I tend to use

the

scientific words for things.)

Now, about balancing the 3's and 6's. All of the intake is dietary. Again,

they are essential fatty acids- your body cannot make them, you have to

ingest them.

Olive oil tastes good, but really has no usable essential fatty acids.

I'm glad you are not using any hydrogenated oils or fats. I just found a

really great website by Enig Ph.D., from the University of land,

the

expert in hydrogenated oils. What the food industry doesn't want us to know

is enough to really make me sick. This is one more example. For anyone

interested, here is the website: http://www.heall.

com/body/healthupdates/food/hydrogenatedfat.html

Here is a suggested means of getting a BALANCE of the 3's and 6's.

I would start with some COLD PRESSED organic Sunflower Oil (Omega Nutrition

has probably the highest quality available anywhere- you can visit their

website at Omeganutrition.com).

Use about 3 TABLESPOONS of the SUNFLOWER OIL -that will give you omega 6's-

and about 2 TABLESPOONS GROUND WHOLE FLAX SEED (the OIL is too strong- it's

concentrated). The seeds will also give you something to regulate the

bowels,

whether your child has diarrhea or is constipated- it provides bulk as well

as nutrients. (The flax seed supplies omega 3's.)

After your child has done well on these for a while, then you can add in

some

fish oil- we use Eskimo-3 from Tyler- it is balanced EPA/DHA. Many kids seem

to also need Evening Primrose Oil. It is a good source for GLA (an Omega 6).

('s testing showed he was low in GLA.)

Here's what I do, but you can mix these into various foods (which we also

do). I use a seed/nut butter mixture and loves it. Here's my recipe:

2

TBS. Sunflower seeds, 2 Tablespoons Flax seeds, 2 TBS. Sesame seeds. Soak

over night- helps them breakdown so they don't come through whole. (I soak

them in an electrolyte solution.) Soaking also helps the oils and enzymes to

be released. Then I put them in the food processor (I have a mini one) and

blend them fairly well. Then I add 2 TBS. of Sunflower OIL and 2 TBS. of

Almond butter. (No long chain fatty acids like in Peanut butter, and good

wholesome Omega 6's and 3's that my child enjoys.)

We had a fatty acid analysis done on through s Hopkins- he was

high in the very long chain fatty acids. He was low in 3's and 6's. We are

supplementing under the guidance of our physician with the appropriate fats

for his needs.

Hope this helps.

Ruth, 's mom

(17-autism/LKS)

Original Message:

Message: 2

Date: Sat, 17 Mar 2001 11:09:08 -0000

From: snunes@...

Subject: Re:Question to Andy about Cod Liver Oil

Thanks for sharing that. I have two questions. You also mentioned

the build up of long chain fatty acids. Will balancing the omegas

correctly handle this? And if so, how do you properly balance them?

I know the ratio is 4:1. But some of the intake is dietary. We only

use olive oil sparingly and some snacks have cold expeller pressed

safflower oil. So is there a formula which takes dietary intake into

account and then recommends dosage of 3's to 6's?

Thanks,

N.

________________________________________________________________________

April 23, 2001

'oxyplus ' wrote:

====

-

- OxyPLUS is an unmoderated e-ring dealing with oxidative therapies, and other

....'

> Take a look to the attachment.

July 9, 2001

wrote:

To manage your subscription settings, please visit:

For links to websites about JRA:

http://www.geocities.com/Heartland/Village/8414/Links.html

------------------------------------------------------------------------

There are 8 messages in this issue.

Topics in this digest:

1. Re: crying

From: AplBlssm@...

2. Re: New to all this

From: AplBlssm@...

3. Re: Elevated Liver Count-Please Help

From: dkakheath@...

4. my daughter jenny

From: tec1959@...

5. recentlty dx jra

From: tec1959@...

6. RE: Hi. New to list

From: LorieJo

7. Re: Hi. New to list

From: mentorvic@...

8. Re: Hi. New to list

From: srargem35@...

________________________________________________________________________

Message: 1

Date: Sun, 8 Jul 2001 12:46:04 EDT

From: AplBlssm@...

Subject: Re: crying

In a message dated 07/03/2001 5:53:45 PM Pacific Daylight Time,

srargem35@... writes:

> Lynn....there are some teachers who read the material...but i have dealt

> with

>

When was diagnosed, we demanded a meeting of ALL her teachers. That way

we knew they all knew what her problem was.

July 10, 2001

Hi Christy

If you go to the Arhritis Foundation site you can click on " camps " and get a

complete listing of JRA camps nationwide. You can also call your local

chapter of the AF for information. The website is www.arthritis.org

There are camps that are just a couple of days and others that are 2 weeks.

I hope you find one in your area. Also, some are free, others are not. But

most offer scholarships, so don't let cost be an issue.

Liz

Re: crying

>

> In a message dated 07/03/2001 5:53:45 PM Pacific Daylight Time,

> srargem35@... writes:

>

> > Lynn....there are some teachers who read the material...but i have dealt

> > with

> >

>

> When was diagnosed, we demanded a meeting of ALL her teachers. That

way

> we knew they all knew what her problem was.

>

August 8, 2001

Can anyone explain to me the difference between CMT pain or discomfort and

arthritis in the legs? Lately I have been experiencing leg pain and not sure

which it is. If its CMT pain then I'll have to cutback on walking and other

leg exercises since it may be causing muscle decrease. If its arthritis then

all continue my daily routine.

Thanks.

August 10, 2001

In a message dated 8/8/2001 9:23:05 PM Central Daylight Time,

pmaher7777@... writes:

> Can anyone explain to me the difference between CMT pain or discomfort and

> arthritis in the legs? Lately I have been experiencing leg pain and not

> sure

> which it is. If its CMT pain then I'll have to cutback on walking and

> other

> leg exercises since it may be causing muscle decrease. If its arthritis

> then

> all continue my daily routine.

> Thanks.

>

, Do you wear AFO's or use any kind of aid for walking? I ended up with

severe arthritis in my right hip due to the way I walked(limped really) for

so many years. So, if it is arthritis, you might want to look closely at just

how you are walking. C

August 21, 2001

Hey Cori,

You awake again? I agree, peroxide should only be used for accumulated,

stubborn deposits in the ear. I grew up around coal mines for some years and

those blokes (men) had long fingers of combined wax and coal dust. BTW

another weird thing about me, one of my ears doesn't build up wax, just

eczema. Yeah, I know, must be my mother's fault. *G

Di

September 14, 2001

In a message dated 9/14/2001 7:57:39 PM Eastern Daylight Time,

dwarfism writes:

> Dan, for what it's worth...

>

> This list has always been quite shall I say " saucy " at times ;-)

>

> In some ways people keep going over the same old things because they

> are emotionally trying to get a handle on something that

> intellectually doesn't make a whole lot of sense (in other words what

> did these strikes accomplish in the long run?). So there is the

> issue... we keep going round and round.

>

> Feelings are at a high right now. All of many of us can do (beside

> donations of blood and money) is talk about it. That does bring

> comfort (believe it or not!) on a certain level because we are

> sharing a grief. But as I have been known to say " death brings out

> the best and the worst in people " .

>

> I would bet 99% of all the other list are going through the same

> thing. Getting back to 'normal' will take a while because

> well...things are just not normal. Our lives, living with dwarfism

> (at least for me) takes a very back place right now in my mind,

> intellect and emotions. Sharing my grief is right up there.

>

> Beside slamming another (which I agree should not happen) I would say

> that time would be the best healer of the list as a whole. I ask

> humbly that you give the list at least a few more days before you

> feel the need to perhaps moderate. Unfortunately, we all know that

> " freedom of speech " can get real snappy at times.

>

> I do hope that people do heed your thoughtful warning and that we can

> be open with our thoughts and feelings, while respecting the very

> same rights of other people as well.

>

> Ginny

>

Well said Ginny!

While this issue might not directly deal with dwarfism, it still affects us

as people, and I don't think this should be silenced to a certain

degree-granted if it goes on for a long time, then it's different or if it

gets out of control.

Basically, whether or not it deals with dwarfism isn't so much the issue as

whether it deals with us as individuals. I'm not saying the list be changed,

just let dwarfism take a back seat for a few more days, like Ginny said.

September 12, 2002

, you daughter is making great progress I am glad you are making a

big deal out of it. My daughter has went from 10 words about a year and a

half ago too now I can not even count. She is learning sentences also a lot

of echolalia,but she also use's some of that in proper text so your right no

gain is too small never with autisim. Too those parent's who do not care what

a shame every kid has a chance I think it depends on the parent.I love my

little Noelle ,and would not change a thing about her she looks just like a

precious moments ,and she is mine! God gave me her for exchange for my dad I

could not have ask for a better swap!lol Take care ,and keep on doing what

your doing your daughter will make gains for every one step forward somtimes

there is 3 steps back. le

January 19, 2003

Are you sure there is no such thing as a cheat weekend?

This weekend after doing soo good has been sooo bad.

I feel like I have blown it. But I know I haven't and I know tomorrow is

another day.

Tomorrow will be my third week. I don't believe that this weekend has set me

back totally but I don't plan on doing this again. I'm going to be more

prepared for these days. I don't buy Protein bars but I think I will buy a

few keep them in the frig for days like the ones I just had. I will not beat

myself up about this. I did do my lower body yesterday. Today I feel as

though I worked my right thigh alittle too much. So I didn't do my Cardio

today. I wanted to give it alittle time to heal. I don't wan't to not be

able to do my workout because I injured myself. I don't feel bad about not

doing my cardio today because I have been right on track with my workouts.

What I feel bad about is I have gone way over the line in my eating this

whole weekend. What brought this on? I think I know. First it was not

seeing the scale move. Even though I have been having success with the tape

measure. And I put on my tight jeans and they are still too tight but the

fat that hangs out around the waist has gotting noticable smaller. So even

with the success I have had I still ate. I am an emotional eater. I am

learning this. Sometimes I think to myself that its just not worth it. But

I know in my heart that I don't want to be fat. I don't like myself this

way. But anyway. I think another thing that set me off was My husband

bought me a car. Granted it needs a motor. But for someone that has a 1

year old and a 2 year old. It is my hope for something to get out of the

house with. I have no freinds where I live. I have no way of getting out of

the house to make some because my husband uses the truck. So my life is I

sit home 24-7. I get out to go pay bills and go food shopping and sometimes

we go out to eat. but that is it. Anyway, I got alittle off track. I just

found out that my husband planned on giving my car to his daughter. He

bought me the car and didn't even ask me if it is ok. Then he turns around

and tells me he is going to sell it and use the money for the mortgage. I

told him that I could help pay the bills if I could get a job. God do I

wan't a job. Anyway he told me that what kind of job can I get that would

cover a babysitter and still have enough left to help? Well, shot my dreams

to crap. I have always been a self sufficiant person. And everytime my

husband says to me well some of us have to work. It just sends me into a

tail spin. I feel like my life is just passing away while I sit in this

house. That car was my hope of getting out. But I'm not sure where that is

going to go now. All this and then my husband tells me I am upsessed ( sorry

can't spell ) will food and exercise and he has never seen anyone like me.

He tells me that someone must have done something to me to make me feel this

way and he was not being nice about this. What is a person supposed to do?

I get no support in anything I do. I have no freinds, no job, nothing.

Sorry I am not usually like this. Guess I am so very upset about all this

that I just ate and ate for two days. I will not give this up now. I know

that I will come to grips with this and pick myself up and brush myself off

and keep trucking because that is how I am. I will not give up. Somewhere

along the way things will get better. Maybe it will take till my children

are in school or one atleast but it will get better. I am sorry for this but

I needed to talk about this.

Thanks for listening and thanks for the support this is a great board and has

helped me alot.

lynne

January 19, 2003

Debra, my third son was born in Okinawa. I laughed at the veggie and milk

reference. I swore while we were over there that I would eat a truck load of

fresh, affordable tomatoes when we got back. And, the milk we had was so

full of preservatives that we thought we got younger while we were there.

That stuff was good for over a month after the expiration date. ;-) But, we

miss the island. We have a special needs son, so probably won't get to see

anywhere overseas again. Still, you never know.

WA

> Subject: Re:

>

> We spent some time in Okinawa. My daughter was born there. I remember

> the days of buying $4 heads of lettuce and having to drink the

> reconstituted milk. I couldn't wait to get back to real milk. But

> then it was back to the states and now we've decided to settle so I

> probably won't get to see any other part of the world now. If you

> need things that you can't find let me know. I'll be happy to ship

> them to you. After all, we spouses have to stick together.

>

> Debra

January 19, 2003

In a message dated 1/19/2003 4:45:30 PM Central Standard Time,

kimberlylynne379@... writes:

> All this and then my husband tells me I am upsessed ( sorry

> can't spell ) will food and exercise and he has never seen anyone like me.

>

> He tells me that someone must have done something to me to make me feel

> this

> way and he was not being nice about this. What is a person supposed to do?

>

> I get no support in anything I do. I have no freinds, no job, nothing.

> Sorry I am not usually like this. Guess I am so very upset about all this

> that I just ate and ate for two days. I will not give this up now. I know

>

> that I will come to grips with this and pick myself up and brush myself off

>

> and keep trucking because that is how I am. I will not give up. Somewhere

>

> along the way things will get better. Maybe it will take till my children

> are in school or one atleast but it will get better. I am sorry for this

> but

> I needed to talk about this.

>

lynne.....this broke my heart. Don't give up! I am so sorry your

husband is not supportive of you. Positive reinforcement is so important for

one to succeed. Do you have family to talk to? This board seems to be a

group of very understanding and caring women..... I think you've come to the

right place. Remember - " TO LIVE WELL IS THE BEST REVENGE " - show that

husband of yours how great you really are!

cynthy

January 19, 2003

Wow, lynn, let me start by saying that I'm proud of you for

what you've done so far on the program. Second, you are amazing for

staying home with your kids! I am at home all day with my two boys

(2.5 and 1.5 yrs old) and know how crazy, boring, stressful, lonely,

mind-wracking, and depressing it can be! Yes, it is also full of

blessing and joy and fun, but it has all the previous mixed in as

well. I went the first year, as you did, without a car or friends,

and believe me--I know what you are going through. If you need

someone to talk to, please send me an e-mail (yoryocorina@...)

One thing that totally helped me was when I moved to the states and

got involved with a MOPS group (mothers of Preschoolers). They have

a website where you could find a close meeting and I know (knowing

the type of women that go to these groups) you could ask the leader

if someone there would be willing to give you a ride, and no one

would think twice. nn, you NEED support...and right now it

doesn't sound like your husband realizes what kind of emotional

support you need (I'm sure he thinks he's meeting all of your needs

by providing financially).

Another thing--I am also an emotional eater..and also had a horrible

weekend. Not saying it's o.k.--but I was sure glad to see that I

wasn't the only one!! Let's start anew, not tomorrow, but now!! I'm

going to get up after this writing and get a big glass of

water...then maybe take a walk outside. What do you think??!

Again--write to me if you feel like it. If you need a phone-friend,

we could work that out. Those of us with two toddlers need the

support!!

Corinna

January 20, 2003

Hey , give yourself a pat on the back you're doing the right thing!

I'm proud of you. We're both on the same boat, as I am a mother of two (20

mon and 31/2 yr old) housewife, with no car, stay home 24-7. My advice to

you is to focus on the positive things don't look at the negative stuff, for

they will keep bringing you down. Here's my email if you need to talk to

someone. valdivieso@...

~Keila

-- Re: Digest Number 1007

Are you sure there is no such thing as a cheat weekend?

This weekend after doing soo good has been sooo bad.

I feel like I have blown it. But I know I haven't and I know tomorrow is

another day.

Tomorrow will be my third week. I don't believe that this weekend has set

me

back totally but I don't plan on doing this again. I'm going to be more

prepared for these days. I don't buy Protein bars but I think I will buy a

few keep them in the frig for days like the ones I just had. I will not

beat