Re: vitamin/mineral suppliment

[Guest guest]

-

How many puffs of Flovent total per day?

Make sure he does NOT drink anything right after taking it, unlike what

one would do if INHALING it (its original intent).

Did you talk to Amy Drawe(drawe@...) Her son had successful

resolution of his EE on Flovent.

-- Idiopathic Eosinophilic esophagitis; Mom to 15, IEE,

NIssen/GT; Ken,11, IEE; Korey,7, IEE (NG); Kody, 4, IEE/CIPO. G/JTs;TPN;

Killian,2, IEE (NG); SJHarlow@...

http://www.c4isr.com/harlow

[Guest guest]

-

How many puffs of Flovent total per day?

Make sure he does NOT drink anything right after taking it, unlike what

one would do if INHALING it (its original intent).

Did you talk to Amy Drawe(drawe@...) Her son had successful

resolution of his EE on Flovent.

-- Idiopathic Eosinophilic esophagitis; Mom to 15, IEE,

NIssen/GT; Ken,11, IEE; Korey,7, IEE (NG); Kody, 4, IEE/CIPO. G/JTs;TPN;

Killian,2, IEE (NG); SJHarlow@...

http://www.c4isr.com/harlow

[Guest guest]

-

How many puffs of Flovent total per day?

Make sure he does NOT drink anything right after taking it, unlike what

one would do if INHALING it (its original intent).

Did you talk to Amy Drawe(drawe@...) Her son had successful

resolution of his EE on Flovent.

-- Idiopathic Eosinophilic esophagitis; Mom to 15, IEE,

NIssen/GT; Ken,11, IEE; Korey,7, IEE (NG); Kody, 4, IEE/CIPO. G/JTs;TPN;

Killian,2, IEE (NG); SJHarlow@...

http://www.c4isr.com/harlow

[Guest guest]

I am quite depressed today. Sorry to all of you really going through the

hell. Some times I am pretty good, but today I am not. Certain now that two

weeks after two month prelone course son is refluxing again. you can hear

him and see him swallowing. I think they will probably recommend prelone

again. He is already on Flovent which is insufficient by itself with him.

Anyone have any thoughts on long term maintainance levels of steroids. Will

it work? How about side effects? What is that allergy test called again?

Thanks

Pete

[Guest guest]

BJ takes Tums for calcium. We were told they contained a good amount and

much better tasting then the calcium tablets.

Dawn

Sferrazza wrote:

>

>

> Does anyone take or can someone recommend a good vitamin/mineral

> supplement in liquid or chewable form?

>

> We have increased Dan's flovent puffs to 3X a day. We are going to call

> Dr this week and see if he will meet with us for a consultation.

>

> Dan's Mom IEE 17 years

>

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

> Ta Da! Come see our new web site!

> http://www.onelist.com

> Onelist: A free email community service

[Guest guest]

The prelone is not doing anything for reflux, BJ has had pretty good success

with Prilosec. And for all the others too, it seems BJ is on the verge of a

relapse. He is having 6-10 stools a day and all contain everything he eats.

He goes in to get his tonsils and adenoids out on April 7, he will be in April

6-10 and they are going to scope him then too, life was just wayyyyy too normal

for me.

Dawn

Dworjanyn wrote:

>

>

> I am quite depressed today. Sorry to all of you really going through the

> hell. Some times I am pretty good, but today I am not. Certain now that two

> weeks after two month prelone course son is refluxing again. you can hear

> him and see him swallowing. I think they will probably recommend prelone

> again. He is already on Flovent which is insufficient by itself with him.

> Anyone have any thoughts on long term maintainance levels of steroids. Will

> it work? How about side effects? What is that allergy test called again?

>

> Thanks

>

> Pete

>

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

> Start a new hobby. Meet a new friend.

> http://www.onelist.com

> Onelist: The leading provider of free email list services

[Guest guest]

In a message dated 3/15/99, 8:24:28 PM, eosinophilic gastroenteritis (AT) onelist (DOT) com writes:

<< I think they will probably recommend prelone

again. He is already on Flovent which is insufficient by itself with him.>>

Pete,

Have you tried the Neocate. did not respond as well as hoped on the

steroid traetments. We fought the idea of Neocate with an NG tube but in the

end gave in. It was the best thing we ever did. This was the point where we

saw take a major step for the better. He was just two years old when

we did this.

Jen

( 11/7/95, EE, food allergies, asthma)

[Guest guest]

220mg 4 puffs 3x a day. Thanks for letting me know about Amy. I am going to

contact her.

SJHarlow@... wrote:

> From: SJHarlow@...

>

> -

>

> How many puffs of Flovent total per day?

>

> Make sure he does NOT drink anything right after taking it, unlike what

> one would do if INHALING it (its original intent).

>

> Did you talk to Amy Drawe(drawe@...) Her son had successful

> resolution of his EE on Flovent.

>

> -- Idiopathic Eosinophilic esophagitis; Mom to 15, IEE,

> NIssen/GT; Ken,11, IEE; Korey,7, IEE (NG); Kody, 4, IEE/CIPO. G/JTs;TPN;

> Killian,2, IEE (NG); SJHarlow@...

> http://www.c4isr.com/harlow

>

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

> We are proud as punch of our new web site!

> http://www.onelist.com

> Onelist: The leading provider of free email community services

[Guest guest]

I am a little confused. I thought the steroids were for the eos, not the

reflux. AJ takes prilosec for the reflux. It has worked great for her.

She had tried zantac and propulsid-to move the food more quickly out of the

stomach and a few others. This is the only thing that seems to work. It

comes in capsule form. We open the capsule and she takes it like a

shot-putting all the beads into her mouth. She has been taking it this way

since before she was 2. We tried having it compounded but this was much

easier-for us.

Phyllis

[Guest guest]

Pete --

Long term high dose steroids are bad, bad, bad. Reflux, unless it is

destroying the esophagus, is NOT as bad as long term steroids.

Have you tried elementaion diet yet? IF the reflux is causing grade

II-III esophagitis, have you considered a wrap? Steroids are NOT the

answer for reflux, as a matter of fact, while they certainly wipe out

eosinophils they make reflux WORSE.

-- Idiopathic Eosinophilic esophagitis; Mom to 15, IEE,

NIssen/GT; Ken,11, IEE; Korey,7, IEE (NG); Kody, 4, IEE/CIPO. G/JTs;TPN;

Killian,2, IEE (NG); SJHarlow@...

http://www.c4isr.com/harlow