update

[Guest guest]

Bea:

Hope things with start to turn around soon. I will keep you in my

prayers. Thinking of you.

Love,

Sharon

mommy to Jake (5) and fraternal twins (34.5 weeks) (3/30/97) - Cole -(nda)

and Clayton (eosinophilic gastroenteritis, food allergies (milk, soy, eggs,

wheat), g-tube, Nissen and possible latex allergy, some DD, undiagnosed neuro

issues and sensory integration disorder and now tremors. WHEN WILL THIS END)

[Guest guest]

Jeff

Do you take 1600 mg of Neurotin at bedtime? I take 600 mg at suppertime and

900 at bedtime.

larry gibbens, 60, sunny and warm Baldwinsville, NY, can you believe it?

[Guest guest]

,

Have you tried Neurontin? I have had very good success with it with

almost no side effects. The biggest problem (besides cost!) is finding

the right dosage. My first neuro started me on 300 mg. which was

ineffective, then increased to 400 mg. I asked to double it and he ok'd

to 800 mg., which I did for over a year. It was fair-to-middlin'. Then

second dr. promptly doubled that and it works like a champ.

I think Neurontin is pretty good if your problem is pretty much all RLS,

and you're also not dealing with a lot of non-insomnia related anxiety.

If you need sleep *REAL* quick and you're dealing with a lot of

sleep-deprivation anxiety, you might consider 1/4 mg. of Xanax at

bedtime. Beware of dependence with Xanax!

This is my personal experience, and not professional medical advice.

Good luck.

Jeff P. 45

Colo. Spgs. where it is 65 and sunny (again!) and you can ski in your

shorts (if you can find any snow!)

> Shelman wrote:

>

> Well i fired my sleep dr . He just didn`t want to treat me. My family

> dr said she will try to treat me . She is a very good dr ,she listens

> and will try to find what works .She tryed permax which made me bad

> sick last night . I called the nurse and she will tell the dr ,I gave

> her the list of meds from the web site . don`t know what to try next .

> Still kicking 37 Arkansas

[Guest guest]

Hi Larry,

I take the whole enchalada an hour before bedtime, as per the

prescription. My RLS is mild enough during the day to deal with by

moving around, shifting weight etc. It's lying in bed that *KILLS* me.

LGibb710@... wrote:

>

> Jeff

> Do you take 1600 mg of Neurotin at bedtime? I take 600 mg at suppertime and

> 900 at bedtime.

>

> larry gibbens, 60, sunny and warm Baldwinsville, NY, can you believe it?

[Guest guest]

:

Thanks for the update. I know this is a very difficult time for all of you.

Hopefully, they will be able to trace the other person down that got the other

half of the dura mater. Good luck, take care and hang in there. Liz.

[Guest guest]

:

Thanks for the update. I know this is a very difficult time for all of you.

Hopefully, they will be able to trace the other person down that got the other

half of the dura mater. Good luck, take care and hang in there. Liz.

[Guest guest]

:

Thanks for the update. I know this is a very difficult time for all of you.

Hopefully, they will be able to trace the other person down that got the other

half of the dura mater. Good luck, take care and hang in there. Liz.

[Guest guest]

,

We kept on kids on Neocate for about 4 weeks before scoping them.

If your child's esophagus responded to prednisone, it is NOT reflux.

-- Idiopathic Eosinophilic esophagitis; Soon to be GT; Mom to

15, IEE, NIssen/GT; Ken,11, IEE (GT soon); Korey,7, IEE (GT soon);

Kody, 4, IEE/CIPO. G/JTs;TPN; Killian,2, IEE (GT soon);

SJHarlow@...

http://www.c4isr.com/harlow

[Guest guest]

How many things was he tested for on the Rast test? And which ones?

Dan's mom IEE

garyarm@... wrote:

> From: garyarm@...

>

> Hi everyone, I just wanted to give a quick update on my

> son . He was back in the hospital this week for

> observation after throwing up blood again. This is the

> second time this month. He came home the next day

> feeling fine. We also got the rast test results

> - negative. That was very disappointing, as we were

> hoping for something. He doesn't show any unsual

> alergic reactions to anything, no vomiting, no adbomnal

> pain, no diahrea, no hives, ithcing etc. He seems

> perfectly healthy except for the damage in his esophagus.

> I have started keeping a diary of when he throws up, or

> says he has reflux etc. Maybe this will show a pattern.

> If we try an elemental diet, vivanex or neocate or

> whatever, how long do you need to be on it before

> the esophagus heals? We are considering this

> to either prove or eliminate the allergy question.

> And were just wondering how long our son would have to

> be on it to prove anything. Still not sure if this is

> the right thing to do since he has no allergy symptoms

> and has tested negative on both RAST and two skin prick

> tests for allergies.

>

> This is so frustrating. Beginning to think that maybe it

> is reflux after all.

>

> Hope everyone doing o.k.

>

>

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

> We have a new web site!

> http://www.onelist.com

> Onelist: The leading provider of free email community services

[Guest guest]

Did I miss an email?? I didn't read about a gunman.

[Guest guest]

Robin,

How horrible for them. One of my best friend's husband is a cop and it is a

fear she lives with all the time even in rural New Hampshire.

Sheryl

[Guest guest]

I didn't read anything about a gunman either....Was it in the news?

I've been VERY busy...must have missed it if it was.

Suzanne

Fwd: Update

>Did I miss an email?? I didn't read about a gunman.

>

[Guest guest]

Prednisone, in my opinion should only be used when you have gotten to the

point of eliminating all food and put on a formula like Neocate or Vivonex.

It may sound awful, but it may do the trick. Prednisone is a terrible drug.

It has many, many side effects. Unfortunately Spencer's eos's don't go away

with just elemental feedings. He HAS to be on Prednisone and he has

suffered many, many side effects from it. Better that than the alternative,

which would be death for him ultimately.

How much does your child weigh?? The recommended dosage to start out on

steroids is 1-2 mg per Kilo. Although Spencer doesn't follow that rule

either.

[eosinophilic gastroenteritis] Update

>From: andrewjh@...

>

>Tali's scoping results came back last week and confirmed the existence of

Eeosinophils in her esophigas, stomach and duodenom. She has not been

throwing up much recently (after several months of daily) but she complains

of constant stomach pain. She often says it hurts too much to go to school

but we generally encourage her to go. Sitting around the house acheives

nothing. If she is in real pain during the day she calls and we take her

home. Her diet is becoming more restrictive than ever and very frsutrating.

She generally eats clear chicken broth for breakfast and lunch and a

hambuger (no bun, pickle, etc..) and french fries for dinner. Occasionally

she'll eat a peice of steak and occasionally brocolli or mashed potatoes.

>

>We feel like we are at an impasse and are not sure where to go next. Our

GI is pushing prednisone to see if it can break the cycle. We have resisted

this for over a year but may succumb for lack of an alternative. He

suggests 30mg for a week and then taper for a few weeks. We are scheduled to

see Dr. Sampson and I think I want to wait on the Prednisone until we see

him.

>

>The most frustrating thing about this whole disease is that there is no

answer and seemingly very little knowledge. I generally learn more about the

practical aspects from the day to day experiences described on this list

than from anything else.

>

>Any new thoughts etc.. are always appreciated.

>

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

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

>http://www.onelist.com

>Come join one of 170,000 e-mail communities at ONElist!

[Guest guest]

In a message dated 6/15/99 11:19:25 AM Pacific Daylight Time,

andrea.allred@... writes:

<< Prednisone, in my opinion should only be used when you have gotten to the

point of eliminating all food and put on a formula like Neocate or Vivonex.

It may sound awful, but it may do the trick. Prednisone is a terrible drug.

It has many, many side effects. >>

why? and what are they?

Cathy

[Guest guest]

Cathy,

Steroids do so much damage to a child. Especially young ones. Just to name

a few. They cause unreversable stunt in growth, mineral loss which causes

bones to get thin and fragile (Spencer just missed a step and broke his

leg), Cataract's, severe immuosupprecency (I can't take Spencer anywhere

without worrying that he is going to catch something) They are not able to

fight off just even a normal cold. This part of it is really kinda of

complicated but your adrenal glands put out a normal form of epinephrine to

counter act the insulin production, thus having normal sugar levels in your

blood. Steroids replace the function of the adrenal glands. You can end up

with the adrenal glands completely shutting down even if your child is still

on steroids. If the child goes through any type of trauma (different for

any child) surgery, leg break, fall, fever all of a sudden the adrenal

glands will want to put out epinephrine for the body to adjust to the trauma

and it can't because it has shut down or has partcially shut down. So the

insulin level in the system is overloaded and thus dropping the blood sugar.

In any trauma the child will need a " Stress dose of Steroids " . You will

always have to be on top of this. Some of this just recently happened to

Spencer and his blood sugar went to 16 and he was in and out of a comatose

state. He barely survived. All due to his tube coming apart in the middle

of the night and not getting all of his feeds.

I am not saying that a child is never put on Steroids. Lot's of athsma

kid's are put on steroids but it is for usually 5 days or less orally and

then inhaled. The inhaled form is not at all dangerous, but doesn't do the

job for E.G..

Also if your son has EE flonase might work and would be worth a try before

even elemental formula or steroids.

Of course I am not a Dr. but this is all that I have learned from my doc's.

There are not many out there that completely understand Eos's. It is a very

complicated disease and you need to be really careful. I am not by any

means telling you what you should or shouldn't do, just telling what may or

could happen. Now just a note, this is for long term steroid use....a few

months or more.

I hope that all of that made sense? If not, ask me more.

Love,

Re: [eosinophilic gastroenteritis] Update

>From: Dcjatben@...

>

>In a message dated 6/15/99 11:19:25 AM Pacific Daylight Time,

>andrea.allred@... writes:

>

><< Prednisone, in my opinion should only be used when you have gotten to

the

> point of eliminating all food and put on a formula like Neocate or

Vivonex.

> It may sound awful, but it may do the trick. Prednisone is a terrible

drug.

> It has many, many side effects. >>

>

> why? and what are they?

>

> Cathy

>

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

>Who is the most visited e-mail list community Web Service?

>http://www.onelist.com

>ONElist.com - where more than 20 million e-mails are exchanged each day!

[Guest guest]

In a message dated 6/15/99 7:23:14 PM Pacific Daylight Time,

andrea.allred@... writes:

<< I am not by any

means telling you what you should or shouldn't do, just telling what may or

could happen. Now just a note, this is for long term steroid use....a few

months or more. >>

Thanks boy is that scary. I think the GI said would be on

steroids for about 8 weeks and take cromolyn. the steroids would be inhaled

and swallowed to coat the esophagas. has only 1 kidney, and diabetes

runs ramant in my family with the boys, would steroids increase his chance of

getting it?

Cathy

[Guest guest]

>From: " Allred "

>How much does your child weigh?? The recommended dosage to start out on

>steroids is 1-2 mg per Kilo. Although Spencer doesn't follow that rule

>either.

>

>Dear :

About that doseage: Is that 1-2 mg per kilo per day? We just started a

round at 3 ml per day (1/3 teaspoon) down to 1/4 after four days and then

1/4 on / off for four more doses. Our child weighs about 27 pounds. Our

Drs. assure us that that is a very low dose which sort of matches up with

what you are saying?

Thanks

By the way, we started Gastrocrom four times a day 4/2/99. We seem to

think it might be helping us. We have been pretty symptom free for about 40

days, until two days ago. Not sure though.

>

[Guest guest]

Group,

I was just sitting here after reading all of these postings wondering if any

of you have tried any natural remedies. I wish that you would all go to the

mannatech site online & research their products. After being so very ill

myself from this terrible condition of eosinophilic gastro enteritis I have

opted for some eastern medical relief. It is working very well. I feel much

better & have more energy than I have had in at least 5 years. It only took

the docs 18 months to find my condition after I had been told by at least 6

docs that I was just depressed. What a CROCK!!!!! I too took prednisone,

which didn't seem to help at all, except make me moody & gain tons of water

weight. My indium scan showed a large eosinophilic concentration in the very

spot where I had my bowel resection back in Sept of '97. I started taking

the 2 mannatech products about 3 weeks ago & man oh man what a difference.

These products do not interfere with any other meds that are taken & it

certainly has soothed my tummy pains & episodes of nausea & flushing & rashes

& coughing. Ambrotose & Plus are the 2 products that I am taking. Plus is a

natural steroid. Both of these products aid the body in reinstating cellular

balance. Which from what I understand, cellular imbalance is what we all

suffer from. These white cells can't communicate with each other & start to

attack our organs as foreign entities. So the white cells have gone a bit

wacky & these products help to make them normal again. I invite you all to

visit the mannatech site & seek out some more sound remedies where the

medical field has obviously failed to help us all out. I just finally got so

very frustrated with the medical professionals & docs that had no answers &

continuously looked at me with a blank stare. I hope this info helps some of

you.

If you need to listen to testimonials of real people who have been taking

these products there is a 1-800- number that I would be glad to give those

who are truly interested. It's a free call & it really helped me make up my

mind to try these products.

Take Care U,

in Iowa

(Camp878904)

[Guest guest]

In a message dated 10/15/99 11:01:23 AM Central Daylight Time,

rjdemj@... writes:

<< The ones I

got are both NO carbs! >>

There are hidden carbs in SF Jello... 1 gram per 1/2 cup serving. When the

label says zero carbs, it is not really carb-free. Each serving can have .5

to .9 and still be labeled zero carbs. So, when I have SF Jello and heavy

whipping cream, I count it as 2 carbs, sometimes 3. It is a great treat

when you're craving.....just don't use it as a free food.

Theresa in Texas

256/238*/130 *new number!!

started 8-22-99

goal for Halloween: 236

visit my home page at http://bmttxgal.freeservers.com

[Guest guest]

,

Just remembeer that no carb can mean o-.5 carbs per serving and legally they

just don't have to post it. Jello has equal in it so thats is carbs right

there. Heavy cream, I am not sure if that is the same as whipping cream, is

6.6 carbs per cup. That is what I do to satisfy my sweet tooth too. also,

rei-whip in the can is > 1 carb per 2 tablespoons. just FYI

Hugs

Penny---Ohio

173/157/130

Goal for Oct 31st-----155

List Moderator

http://members.xoom.com/Shadcat708/LC.html

http://www.geocities.com/shadcat708/The__Home.html

[Guest guest]

In a message dated 10/15/1999 12:50:47 PM Eastern Daylight Time,

BmtTxGal@... writes:

<< Each serving can have .5

to .9 and still be labeled zero carbs. >>

Theresa, I thought if it says >1 carb it was .5-,9. but if it said no carbs

it can be 0-.5??

Hugs

Penny---Ohio

173/157/130

Goal for Oct 31st-----155

List Moderator

http://members.xoom.com/Shadcat708/LC.html

http://www.geocities.com/shadcat708/The__Home.html

[Guest guest]

,

WTG on the new number!!!!

Hugs

Penny---Ohio

173/157/130

Goal for Oct 31st-----155

List Moderator

http://members.xoom.com/Shadcat708/LC.html

http://www.geocities.com/shadcat708/The__Home.html

[Guest guest]

Quick question, How much Knox do you use with the Kool-Aid?? I was gonna

get some tonight to go with the Kool-Aid we have on hand for when my son

comes to stay with me but didn't know how much to use.

from Texas

355/348/220 **New number**

_Oates@...

Re: Update

, some people find that they stall if they eat too much aspartame

which is in sugar free jello. I use knox unflavored and add koolaid and

splenda with the whipped cream. splenda is at www.splenda.com Both

suzanne somers and Dr. Atkins speak poorly of aspartame...Jean

Being Big and Beautiful is a state of mind, Never let anyone tell you

different.

[Guest guest]

, some people find that they stall if they eat too much aspartame

which is in sugar free jello. I use knox unflavored and add koolaid and

splenda with the whipped cream. splenda is at www.splenda.com Both

suzanne somers and Dr. Atkins speak poorly of aspartame...Jean

[Guest guest]

Love the quote at the bottom of your mail