Re: steroids vs. elemental diet

[Guest guest]

,

I agree with you whole heatedly. Spencer was first put on elemental diet

with an Ng........with Nutramigen. Still ton's of eos's. Then put on

Neocate.....still a bit of eos's in the esophagus, stomach and small bowel,

then switched to the Pediatric Vivonex and Voila.......no eos's in his

stomach, esophagus, and minimal in his small bowel. His large bowel on the

other had did not change with the elemental diet. Children's hospital of

Pittsburgh last year about this time did a Colonoscopy on him and said they

have never personally seen such an inflamed Colon in their life. ONLY at

that point was Spencer put on Steroids. He has what they call " Primary

Eosinophilic Colitis " Meaning only responds to steroid therapy.

I can be the first to tell you of the terrible side effects of chronic

steroid use. It is awful over time. Even in a years time. He also need's

it for athsma.

Now Spencer did have the Nissen so we didn't have to deal with the eos's in

his esophagus anymore. Just stomach down.

But since your son not had the Nissen and can reflux up food and cause

Esophogitis than " Flonase " ......which causes no harm at all. Totally

different than " Steroids....i.e. Prelone, Prednisone. "

But you can go about it both ways. If your child is not against going on an

elemental diet than go for it. If it takes it away than great......BUT you

won't know if just taking the flonase would stop the esophogitis.

You might want to try the elemental diet for a while and get his esophagus

under control and then slowly start adding one food per week or even month

for that matter and see if the esophagus get's worse.

What elemental formula are they wanting to put your son on? That will

determine sometimes if the insurance will pay for it. Like for say over the

counter elemental they might not want to pay for.....i.e. Nutramigen or

Peptemen Jr. etc.

Love,

[eosinophilic gastroenteritis] steroids vs. elemental diet

From: garyarm@...

Thanks so much for all the input. I just wanted to let

you know my take on the steroid issue. Please let me

know if you disagree and why.

If we put on steroid therapy, what does that prove?

doesn't it just reduce the inflamation temporarily.

In other words, you are only treating the symptom, not

the cause. After stopping steroid teatment won't the

inflamation return?

I would rather try to find out what is causing the

problem and try to fix/control that. I am really

against using steroids because of all the serious

side effects. If the elemental diet works doesn't

that prove food allergy? At least we would have

something to work with.

Am I mistaken in believing that steroid use would only

reduce the inflamation temporarily, and not prove

anything? I would rather put my son through a trial

elemental diet than steroid use, because the diet is

only temporary, and side effects of steroids can be

life-long.

Thanks again,

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

[Guest guest]

well, there are several sides to the steroid issue. If the inflammation is

from reflux or some other cause other than allergy, steroids will NOT

decrease the eos. However, at least in our case, this is how we determined

that the kids did have EE in fact and not some other inflammatory reaction.

Steroid therapy in high doses for length periods of times (years) will have

deleterious effects. Certainly, no one suggest this therapy in that

fashion. Prednisone therapy completely eliminated all of our symptoms in

all of us; however, for US once removed, all symptoms returned. HOWEVER,

for some kids with EE (and EG), they can have resolution of symptoms on very

low dose prednisone or prednisone taken intermittently when symptoms arise

(once, twice, several times a year). In this situation the risks of

prednisone therapy are probably less than the problem associated with tube

feeding! With our oldest son, 16, we have decided to treat him

intermittnetly with high dose steroids when his symptoms arise. So far,

that has only been twice in the last year. He much prefers this, obviously,

then going back to tube feeds.

Flonase, flonase, flonase is the easiest thing to try first. Tube feeding

a kid is sometimes unavoidable and a necessary evil but it is really, really

hard partaicularly on kids who have NOT been tube fed from birth/baby years.

It really plays havoc with their self esteem and other issues. There are

otehr issues that are a major pain in the butt with gtubes (granulation

tissue for example, tubes popping open and falling out at inopportune

times).

So, yes, steroids have their place. An elemental diet IS the treatment of

choice if restricted diets, Flonase therapy and intermittent steroid use has

failed. It is a tough, tough thing to do and I really do not konw how

" normal " families that have to eat can handle it. It is tough enough in

this house and we're all in the same boat.

Okay, off my soapbox.

(eos esophagitis/GT, former TPNr)

(Mom to 5 with EE/GTs; , , Korey, Kody (TPN), Killian

[eosinophilic gastroenteritis] steroids vs. elemental diet

From: garyarm@...

Thanks so much for all the input. I just wanted to let

you know my take on the steroid issue. Please let me

know if you disagree and why.

If we put on steroid therapy, what does that prove?

doesn't it just reduce the inflamation temporarily.

In other words, you are only treating the symptom, not

the cause. After stopping steroid teatment won't the

inflamation return?

I would rather try to find out what is causing the

problem and try to fix/control that. I am really

against using steroids because of all the serious

side effects. If the elemental diet works doesn't

that prove food allergy? At least we would have

something to work with.

Am I mistaken in believing that steroid use would only

reduce the inflamation temporarily, and not prove

anything? I would rather put my son through a trial

elemental diet than steroid use, because the diet is

only temporary, and side effects of steroids can be

life-long.

Thanks again,

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

[Guest guest]

In a message dated 7/21/99, 3:12:23 PM, eosinophilic gastroenteritis (AT) onelist (DOT) com writes:

<< I would rather put my son through a trial

elemental diet than steroid use, because the diet is

only temporary, and side effects of steroids can be

life-long.>>

I believe there are positives and negatives to both these treatments. The

elemental diet with ng tube was very helpful for us. It helped us to start

from square one and positively identify foods that were his triggers.

did really great for about a year after being on the tube. A couple

months ago had some problems again and a scope showed the eos. were

back in force. At this point (3.5 yrs old) I cannot imagine taking him off

all food again even though I know that something else must now be triggering

the eos..

has been on steroid treatment for weeks now. We have started the

taper and figure that it will be a total of 11 weeks that he will be on

steroids. This is still considered short term use. There are short term

side effects such as swelling and mood swings but the docs told me that this

really is not a long enough course to cause long term side effects.

Our GI also feels that some children can be treated with intermmitent short

burst of steroids. Some of his patients can go a year or two between

episodes.

If 's symptoms return we have decided to try the Flonase. Our doc

would not do Flonase and oral steroids at the same time because we would not

know which treatment was truly effective.

I know this is a hard decision to make. The only thing I can say is I do not

regret putting on the tube in the past but he was only 2 yrs old and

was already living on a very restricted diet. The elemental diet and

elimination diet were very helpful in identifying triggers. Having said

that, I just couldn't bring myself to do it this time. If I have to at some

point I will but I first want to exhaust every other option.

Jen

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

[Guest guest]

Hi

My doc felt that steroids are a " bandaid " to the problem and he put Zach on

Neocate. Thankfully we were lucky and that worked. He is doing better. It

took about 6 weeks on Neocate to finally see a difference. But oh what a

difference. He is a happy little boy now.

Heidi

Zach 16 mon allergic to too many things to list, sugar intoerances, EE, GERD

[Guest guest]

Can't the older kids just drink the eliminental formula insted of having a

ng tube?

Cathy

[Guest guest]

My daughter has been drinking Neocate since she started which is almost 2

years ago. She has never had any type of tube. She is 3 1/2 now.

Phyllis