RE: (unknown)

March 16, 2000

Lynn,

I agree with Judy wholeheartedly. I have a large folder FULL of Emails I've received from all over the world of people trying to push their products without a CLUE of what the disease process is we are dealing with, how it works and doesnt work and what actual HARM their products could inflict.

Caution, caution caution. Education, education education.

Steph.

Re: [eosinophilic gastroenteritis] (unknown)

Lynn,

I certainly wouldn't try anything like that without first checking with his doctors. I am even shy about taking vitamins because I am not sure how I will react to them. I think you do want to be informed about what alternatives are available and then with the doctors make educated choices.

So many of these things like the Aloe you are talking about are just high priced elixirs like the traveling Medicine shows used to sell. They make promises with no real facts to back them up. I don't know that this is anything like that, but I urge caution.

Judy

Re: [eosinophilic gastroenteritis] (unknown)

From: hudlowl@... Rosie,Thanks for replying. I guess what I'm hearing is that it won't hurt totry, but there might not be any improvement. I guess I'll talk to Shane'sdoctors about trying the Aloe Concentrate.Lynn

March 16, 2000

,

Thanks! That helps alot.

Lynn

" Allred " andrea.allred@...> on 03/16/2000 01:21:11

PM

Please respond to eosinophilic gastroenteritis (AT) onelist (DOT) com

To: eosinophilic gastroenteritis (AT) onelist (DOT) com>

cc:

Subject: Re: [eosinophilic gastroenteritis] (unknown)

Lynn,

I just wanted to offer my support and agree with you that it is very hard

on

parents and children. Although it seems hard to look at our kids as

normal,

I really think they are. I guess food isn't everything and their

personalities shine through all of the other stuff. Spencer has a Central

IV line a G-tube and a J-tube but I still let him do most things that he

can

do without dangling himself. I can't recall a time when someone has looked

at him as not normal. In fact yesterday we were shopping at a bunch of

different places and went to dinner and I didn't get one comment except

things like " Boy you son has a lot of energy and spark " (That was at

dinner)

He only had a cup of water and a spoon. He also had an IV in plain view

for

everyone to see. Although I probably would have thought that I would get a

lot of comments, I did not get one regarding what was wrong with him.

Even with three tubes in this kid he's as normal as they come........Hope

this helps.

[eosinophilic gastroenteritis] (unknown)

> From: hudlowl@...

>

> Hi. The information that I've been getting over the past few days from

the

> support group is really hitting hard and making me feel very depressed

and

> hopeless about this illness. I can really relate to Dawn note

about

> being sick and tired. I know it's a good thing to find people out there

> who are dealing with this, but yet what I'm hearing is making me realize

> now more than ever how sick Shane is. I knew before that this illness is

> very serious, but I guess I've just kept hoping for the best and I've

tried

> to stay optimistic for Shane's sake. But it doesn't sound like there's a

> lot of hope for leading a normal life with this problem. The doctors at

> Hopkins Hospital told me that some kids outgrow this illness after 5

> or 6 years of being sick, and can suddenly eat just about anything they

> want. I know the Washington Post article on the Harlow family said the

> oldest boy did outgrow it. , or anybody, do you know the

> statistics for outgrowing the symptoms? Are there any statistics

> available?

>

> Also, or anyone else, how did you make the decision to not eat

> and just be fed tubularly? How do I know when it's getting to be too

long

> trying the steroids? I know Shane can't be on them forever, but I'm

> starting to feel like I better be making this decision sooner rather than

> later, or he could end up with a whole bunch of other serious problems

from

> the steroids. When I read the Washington Post article, so much of what

the

> Harlows have gone through up to the point of switching to the tubular

> feeding sounds just like what my son has been going through for the past

> two years. I haven't shown Shane the Washington Post article and

discussed

> it with him yet. I think I have to, but I don't know when the timing

will

> be right. I think it will really discourage him. He's already

struggling

> emotionally because of this illness. But he's 12 years old and I think

> he's old enough to have some say in what we do from here. And if he is

> only being fed tubularly, how will we know if he outgrows the symptoms?

> Shane and I have to go back to Hopkins Hospital on March 30, and I

> want to go with as much information as I can to discuss this with the

> doctors. So I appreciate any advice anyone can give me.

>

> I recently met a man who is into health products. He told me about a

> product that the Oasis Wellness Network distributes called Active Aloe

> Concentrate that he claims is all natural and might help Shane with his

> digestive problems. Below is the url to the site he referred me to with

> information on the product:

>

> http://www.oasiswellness.com/_products/activealoeW.html

>

> Has anybody heard of this before? Tried it? Has an opinion as to

whether

> it is something that should be tried or not? By the way, if you look on

> this website, the description says one of the ingredients is natural

> flavors. I checked with Bob Highland, the man who told me about this,

and

> he says there are no food allergins in the natural flavors.

>

> When Shane was first diagnosed a year and a half ago, I took him to a

> recommended holistic doctor to see what the holistic approach might be

for

> dealing with this illness. After talking to several doctors, I decided

not

> to try this approach yet. I was told that I must be very careful with

> mixing prescription medications with natural herbs because the results

are

> unpredictable. So, I have not tried this approach yet. Does anyone out

> there have any experience with using herbs or holistic medicine for this

> problem?

>

> Lynn

> Global Methods & Tools

> IBM Global Services

> 800 North Frederick Avenue

> Gaithersburg, MD 20879

> T/L 372-3307

> Fax T/L 372-8963

>

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

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March 16, 2000

Judy and Steph,

Thanks for the advice. I won't give Shane anything unless the doctors

think it won't cause a problem.

Lynn

" Steph " harlowsteph@...> on 03/16/2000 02:33:57 PM

Please respond to eosinophilic gastroenteritis (AT) onelist (DOT) com

To: eosinophilic gastroenteritis (AT) onelist (DOT) com>

cc:

Subject: Re: [eosinophilic gastroenteritis] (unknown)

Lynn,

I agree with Judy wholeheartedly. I have a large folder FULL of Emails

I've received from all over the world of people trying to push their

products without a CLUE of what the disease process is we are dealing

with, how it works and doesnt work and what actual HARM their products

could inflict.

Caution, caution caution. Education, education education.

Steph.

Re: [eosinophilic gastroenteritis] (unknown)

Lynn,

I certainly wouldn't try anything like that without first checking with

his doctors. I am even shy about taking vitamins because I am not sure

how I will react to them. I think you do want to be informed about what

alternatives are available and then with the doctors make educated

choices.

So many of these things like the Aloe you are talking about are just high

priced elixirs like the traveling Medicine shows used to sell. They make

promises with no real facts to back them up. I don't know that this is

anything like that, but I urge caution.

Judy

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Re: [eosinophilic gastroenteritis] (unknown)

From: hudlowl@...

Rosie,

Thanks for replying. I guess what I'm hearing is that it won't hurt to

try, but there might not be any improvement. I guess I'll talk to Shane's

doctors about trying the Aloe Concentrate.

Lynn

[iMAGE]

March 20, 2000

Hi Lynn -

i started taking prednisone again a week ago and have found that I've had an

unusual amount of headaches jsut in that short time..they haven't been too bad

for me, just kind of a dull ache. I don't know about heart problems, but the

steroids could be causing his heart to race...i feel that way sometimes too...

Beth - Adult with EG

March 20, 2000

Lynn,

You might want to get your blood sugar checked out.

[eosinophilic gastroenteritis] (unknown)

> From: hudlowl@...

>

> Hi. Can anyone tell me if steroids can cause headaches? Can they be

> damaging to the heart? Shane has been getting lots of severe headaches

> lately and has severe chest pains two to four times a month.

>

> Thanks,

> Lynn

>

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

> MAXIMIZE YOUR CARD, MINIMIZE YOUR RATE!

> Get a NextCard Visa, in 30 seconds! Get rates as low as

> 0.0% Intro or 9.9% Fixed APR and no hidden fees.

> Apply NOW!

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

>

March 20, 2000

Hi Lynn,

I don't have any personal experience with Prednisone, but found this Web Page that lists the side effects. Headache is one of them.... You might want to check out this page...

http://home.beseen.com/community/razzle00/prednisone.htm

Judy

March 20, 2000

Ditto for me. In the beginning of steroids I get headaches, then heart

racing. Also, when I am coming down on a taper if I taper too quickly, the

same thing happens. You should speak to your doctor. It can also be a

symptom of adrenal insufficiency which can happen if you've been on high

doses for a long, long time.

Steph.

Re: [eosinophilic gastroenteritis] (unknown)

>From: Rosie0613@...

>

>Hi Lynn -

>

>i started taking prednisone again a week ago and have found that I've had

an unusual amount of headaches jsut in that short time..they haven't been

too bad for me, just kind of a dull ache. I don't know about heart problems,

but the steroids could be causing his heart to race...i feel that way

sometimes too...

>

>Beth - Adult with EG

>

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

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>Intro or 9.9% Fixed APR and no hidden fees. Apply NOW!

>http://click.egroups.com/1/936/5/_/474479/_/953580708/

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

>

__________________________________________________

March 31, 2000

In a message dated 3/31/00 3:00:10 PM Pacific Standard Time,

hudlowl@... writes:

<<

You're right. The doctors don't know what's going on and it's very

discouraging. They just told me yesterday that Shane is a very difficult

case. He's not being fed tubularly, but I can see where this is heading.

I could just cry, and do from time to time to let out the stress. My poor

son is scared and depressed and I feel so helpless in trying to help him.

Oh well, at least I have a place to vent now with people that are going

through it too. And that's a help. Thank you all for that.

Lynn >>

isn't tube fed yet either, but he is tired of the same foods and it's

hard to keep his weight up. He too is depressed, and constantly says he hates

his body and wishes he could have a body transplant.

Cathy

mom to 12, AS, EE, allergic to soy, nuts, peanuts, tomato, rice,

carrot, string bean, kidney bean, orange, pear, onion, mustard seed, grape

February 5, 2001

I don't get to the meeting but I enjoy the mosiac list interaction and

information. I think what you are doing is a god send to both the children

and the parents of children involved with this issue..

I believe the more people find out about this the better..

Thanks again.

JB

February 5, 2001

I find Mosaic and other lists to be therapeutic. Imagine how isolating

having autism in the family was before the internet. Dealing with new

parents makes me feel more positive about my own child because we are

constantly reminded about what we should be doing or could be doing. And

everything stays so current - we have decided that Super Nu Thera made

stim more so I will be buying the vitamins you have recommended and written

about in the past Jonathon! And the friendships have been invaluable.

Mosaic has been a god send but it has been a two way street! We have all

made Mosaic what it is.

<< I don't get to the meeting but I enjoy the mosiac list interaction and

information. I think what you are doing is a god send to both the children

and the parents of children involved with this issue..

I believe the more people find out about this the better..

Thanks again.

JB

>>

February 6, 2001

I'm okay with it, I need a larger audience for my stand up routine that I'm

perfecting. And, when I turn the group into a religious organization we

need lots of people to make donations. So, put it in the B&N Newsletter.

Heidi

(unknown)

I doubt we'll have an avalanche of new parents. I left the flyer last

year at COSAC and we didn't have an avalanche. How many new parents

of autistic children are reading the Ridgewood and Noble

newsletter? We have discussed making a flyer for distribution - I

thought we were clear about wanting to spread the word about Mosaic.

If anyone wants to keep the group small I suppose now is the time to

speak up.

Barb

>

> JoAnne:

> The advertising of our meetings at B&N could be a serious issue.

I feel

> that if we B&N them to " go public " and openly advertise our

meetings, we

> *may* get an avalanche of new parents attending who learn of us

through

> B&N... Are we ready for this?

Mosaic meets the 2nd Thursday morning (Paramus Park Food Court) and the 3rd

Wednesday evening (The Arc in Hackensack) of every month. All are welcome.

February 6, 2001

Religious group? Are we starting our own new religion? :c)

JoAnne

ROGER Heidi wrote:

> I'm okay with it, I need a larger audience for my stand up routine that I'm

> perfecting. And, when I turn the group into a religious organization we

> need lots of people to make donations. So, put it in the B&N Newsletter.

>

> Heidi

>

> (unknown)

>

> I doubt we'll have an avalanche of new parents. I left the flyer last

> year at COSAC and we didn't have an avalanche. How many new parents

> of autistic children are reading the Ridgewood and Noble

> newsletter? We have discussed making a flyer for distribution - I

> thought we were clear about wanting to spread the word about Mosaic.

> If anyone wants to keep the group small I suppose now is the time to

> speak up.

> Barb

>

> >

> > JoAnne:

> > The advertising of our meetings at B&N could be a serious issue.

> I feel

> > that if we B&N them to " go public " and openly advertise our

> meetings, we

> > *may* get an avalanche of new parents attending who learn of us

> through

> > B&N... Are we ready for this?

>

> Mosaic meets the 2nd Thursday morning (Paramus Park Food Court) and the 3rd

> Wednesday evening (The Arc in Hackensack) of every month. All are welcome.

>

> Mosaic meets the 2nd Thursday morning (Paramus Park Food Court) and the 3rd

Wednesday evening (The Arc in Hackensack) of every month. All are welcome.

February 6, 2001

>

> > I'm okay with it, I need a larger audience for my stand up routine

that I'm

> > perfecting. And, when I turn the group into a religious

organization we

> > need lots of people to make donations. So, put it in the B&N

Newsletter.

> >

> > Heidi

> >

> > (unknown)

> >

> > I doubt we'll have an avalanche of new parents. I left the flyer

last

> > year at COSAC and we didn't have an avalanche. How many new

parents

> > of autistic children are reading the Ridgewood and Noble

> > newsletter? We have discussed making a flyer for distribution - I

> > thought we were clear about wanting to spread the word about

Mosaic.

> > If anyone wants to keep the group small I suppose now is the time

to

> > speak up.

> > Barb

> >

> > >

> > > JoAnne:

> > > The advertising of our meetings at B&N could be a serious

issue.

> > I feel

> > > that if we B&N them to " go public " and openly advertise our

> > meetings, we

> > > *may* get an avalanche of new parents attending who learn of us

> > through

> > > B&N... Are we ready for this?

> >

> > Mosaic meets the 2nd Thursday morning (Paramus Park Food Court)

and the 3rd

> > Wednesday evening (The Arc in Hackensack) of every month. All are

welcome.

> >

> > Mosaic meets the 2nd Thursday morning (Paramus Park Food Court)

and the 3rd Wednesday evening (The Arc in Hackensack) of every month.

Al

February 6, 2001

Yeah, I get it....totally!

JoAnne

BarbStrate@... wrote:

>

> >

> > > I'm okay with it, I need a larger audience for my stand up routine

> that I'm

> > > perfecting. And, when I turn the group into a religious

> organization we

> > > need lots of people to make donations. So, put it in the B&N

> Newsletter.

> > >

> > > Heidi

> > >

> > > (unknown)

> > >

> > > I doubt we'll have an avalanche of new parents. I left the flyer

> last

> > > year at COSAC and we didn't have an avalanche. How many new

> parents

> > > of autistic children are reading the Ridgewood and Noble

> > > newsletter? We have discussed making a flyer for distribution - I

> > > thought we were clear about wanting to spread the word about

> Mosaic.

> > > If anyone wants to keep the group small I suppose now is the time

> to

> > > speak up.

> > > Barb

> > >

> > > >

> > > > JoAnne:

> > > > The advertising of our meetings at B&N could be a serious

> issue.

> > > I feel

> > > > that if we B&N them to " go public " and openly advertise our

> > > meetings, we

> > > > *may* get an avalanche of new parents attending who learn of us

> > > through

> > > > B&N... Are we ready for this?

> > >

> > > Mosaic meets the 2nd Thursday morning (Paramus Park Food Court)

> and the 3rd

> > > Wednesday evening (The Arc in Hackensack) of every month. All are

> welcome.

> > >

> > > Mosaic meets the 2nd Thursday morning (Paramus Park Food Court)

> and the 3rd Wednesday evening (The Arc in Hackensack) of every month.

> Al

>

> Mosaic meets the 2nd Thursday morning (Paramus Park Food Court) and the 3rd

Wednesday evening (The Arc in Hackensack) of every month. All are welcome.

March 28, 2001

Thanks so much for the welcome! I'm feeling rather bruised and battered

right now because of non-support from the groups over here. Wonderful

weight loss....what's the down-side???

>

>Reply-To: ozband

>To: ozband

>Subject: (unknown)

>Date: Wed, 28 Mar 2001 22:28:24 -0000

>

>Hi Margie,

>

>Welcome on board. Making the decision to have a band is a tough one

>I know, but it is rewarding. I lost 50kgs ( 110 pounds). There are

>some profiles on www.ozband.com.

>

>There are 2.2 pound in a kilo.

>

>You will find this group very supportive and eager to answer your

>queries.

>

>regards,

>

>Cath

>

> > I live here in the US. I'm contemplating LAP BAND surgery. As

>soon as I

> > mentioned it to the support group that I'm a member of, I got all

>these

> > adverse reactions. All of the info I've read on this surgery has

>been

> > positive so I was greatly surprised by their reaction. I have now

>heard

> > stories of continual vomiting, minimal weightloss, gaining back of

>weight,

> > etc. (you get the idea). I would love to hear from your group the

>good and

> > the bad. I'm having difficulty understanding your weights (because

>I'm one

> > of those yankees that does things in pounds). If someone could

>kindly tell

> > me how to convert to pounds, I would appreciate (my math classes

>are quite a

> > distance behind me).

> >

> > THANKS SO MUCH!

> >

> > Margie

> > _________________________________________________________________

> > Get your FREE download of MSN Explorer at http://explorer.msn.com

>

_________________________________________________________________

Get your FREE download of MSN Explorer at http://explorer.msn.com

August 25, 2001

Thanks Judy for the quick reply. Although I am not quite sure what " snook " means

I can guess it is similar to being a " chicken " ?? I am a chiropractic physician

and know just enough to make me scared of the procedure, or any needle/knife for

that matter!!

Thanks again, will let everyone know if I " qualify " and if I don't chicken out.

Gus

NE USA

On Friday, August 24, 2001 at 06:12:57 AM, ozband wrote:

> Gus I am a sook with hospitals and Doctors even tho I am in the

> profession. It is not that bad and the result soon makes up for any

> discomfort. Go for it and enjoy your life more.

> Good luck and keep in touch

> Regards Judy

>

> Big Red Email Account wrote:

>

> > Howdy folks. I am rather new to all of this so please excuse my

> intrusion. I just made my first appointment with our surgeon for

> October 24th. He just completed training under an Australian physician

> and has had quite a few " under his belt " already. I pray that I

> " qualify " for this surgery. I have attempted all sorts of diets with

> no luck. Then I quit smoking and had my gallbladder out in 1988---I

> shot up over 100 lbs. I have had to have knee surgeries and I was told

> the next step for them is to " replace " them, that is, if I don't lose

> weight. Sorry I don't know the metric system so don't get shocked when

> I tell you my weight. My weight (in pounds) is approximetly 375. I say

> approximately because no scales in my doctors office weigh over 350

> and I refuse to be weighed on an " industrial " scale. I know my days

> are limited if I don't do something about this NOW. I have high blood

> pressure, sleep apnea, and all my joints hurt. I am 53 and I act like

> I am twice that age. Hope to re!

> > port back in the future with good news at my first consultation.

> >

> > Gus

> > Western Nebraska USA

> >

> > PS I am afraid of hospitals and surgery so I am very apprehensive,

> but I guess its easier then spending a few weeks in ICU after a stroke

> or heart attack!

> >

> > On Thursday, August 23, 2001 at 12:47:36 PM,

> >

> > ozband wrote:

> >

>

> ozband website:

> http://www.ozband.com

>

August 25, 2001

PS Forgot to ask, anyone know of a good kg/lbs conversion table? If its not in

pounds I am lost.