steroids

[Guest guest]

Thanks all:

For us, the eos apparantly are a real cause of his reflux. The one time he

was on prelone because of asthma, and had no eos. when they did and

endoscopy and and emptying study, his stomach emptied quickly. The other

times during the studies his stomach emptied very, very slowly. The Drs.

opined that the eos could cause his slow gastric emptying AND his reflux.

He really seemed not to be refluxing at all while on the steroids.

Did not get a chance to talk to the Dr. today. Nurse called back and said

to try him on 1/4 teaspoon of Prelone every other day. While I was not

home my wife gave him the Prelone, which he doesn't like and he apparantly

inhaled some, starting a coughing/gagging fit resulting in him spitting up

his dinner, of course a big one on this night, and semi-aspirating,

starting to turn bluish. 911 call, neighbors in the front yard crying,

some of you have been there. Doing fine tonight though.

More questions on the neocate/tube diet. How long are you on neocate before

you try to introduce foods? Some kids will drink the Neocate won't they?

How do you know if a food is causing more eosinophils? Mine is not old

enough to tell us if it hurts yet, plus I think it has been that way on and

off for so long I don't know if he knows the difference.

Also, on the steroids: Is that a big/small/ reasonable dose? Has anyone

ever heard of anyone ever really solving this problem through steroid use

only? Will the things just go away one day?

Thanks as always. Good luck to everyone. I need to go up and spend some

time w/ the shaken spouse but wanted to respond to everyone because I do

appreciate the effort. If I win the lottery, which will be tough because

we don't even have one yet, I am going to give a bunch of money to researh

on this issue/issues. Who's with me?!

Pete

[Guest guest]

Pete,

How scary for you and your wife! I'm glad your little one is okay

now. The docs wanted me on Neocate until I gained 20lbs, to be up to

120lbs in case I lost more weight again when retrying foods. I drink

the Neocate. If you don't smell it, the juice boxes aren't bad at

all. If juice is an option, the powdered formula isn't overly bad.

I'm having allergic reactions to something in all the juices we've

tried (I'm pretty sure it's the corn syrup which my dad doesn't think

I have an allergy to. Guess he thinks my lips naturally look like a

duck bill!) so I haven't progressed too far. Good luck! Hope

everyone at your house is okay!

Kelsey

____

" The angel of the Lord encampeth round about them that fear him, and

delivereth them. " Psalm 34:7

[Guest guest]

How long are you on neocate before you try to introduce foods?

AJ was on a just neocate diet for 3 months before reintroducing foods

Some kids will drink the Neocate won't they?

AJ does and loves it.

How do you know if a food is causing more eosinophils?

How do you know your child is sick to begin with? In AJ's case she

cried for 2 years straight-literally-before we got it under control. As

soon as she begins to whine, we know her stomach hurts. She now talks so it

is easier. Or maybe she won't eat or drink and we know something is wrong.

No whining or crying and we know we are on the right track.

I hope this helps. Glad things are calming down at your house. Phyllis

[Guest guest]

,

Hi , It was nice talking to you and thank you for all the info. I wanted to ask

you about soda when it says carmel or aspartame is that ok as well. If not which

brands of soda do you use that you are ok with . If I can get Miriam off apple

juice and am able to possibly give her soda she will be happy that she can have

something special.

Thanks, Shana

[eosinophilic gastroenteritis] steroids

Has anyone ever had a cure or a tremendous improvment from being on

steroids. If yes, how long did you have to be on it . Do you think short term

use of steroids would be helpful with this disease.

We want to put the G- tube in but Miriam's doctor want to try a short

term use of steroids and then food challenges tosee if that would help before

putting her through a surgical procedure. Miriam is back to just Vivanex with

the rice she was doing well for a short time and even having normalish stools

but then she started having stomache aches and diareah and she herself wanted to

stop eating b/c it hurt her tummy. Even now that she is on just vivanes now 10

days she doesn't have the stomache aches but her stools are still completely

watery. My big problem here is that the doctors here don't have so much

experience with this disease adn they don't know how to guide me.

I am still trying to find a doctor that will take an interest in my son

Yisroel. Miriam's doctor basically said he doesn't want to take care of him b/c

the insurance won't pay for him for my son. So Yisroel is going to be 2 in a few

weeks and he doesn't know how to swallow and he can only take mother's milk I

don't know about anything else until he learns how to eat (swallow things with

texture) he also has no desire to eat as well. Dr. Sampson suggested doing a

swallow study on him but I can't find a doctor who is interested in doing one on

him. Its so frustrating I feel I don't know what to do for them when no doctor

seems to really want to help.

If someone could give me some guidence about the steroids as soon as

possible I am supposed to get back to the doctor soon.

Thank You

Shana ( mom to Miriam 3 1/2 EG . food allergies, NG-tube, Yisroel 23

months food allergies , asthma , and problems swallowing, Tehilla 7 jealous)

[Guest guest]

,

Hi , It was nice talking to you and thank you for all the info. I wanted to ask

you about soda when it says carmel or aspartame is that ok as well. If not which

brands of soda do you use that you are ok with . If I can get Miriam off apple

juice and am able to possibly give her soda she will be happy that she can have

something special.

Thanks, Shana

[eosinophilic gastroenteritis] steroids

Has anyone ever had a cure or a tremendous improvment from being on

steroids. If yes, how long did you have to be on it . Do you think short term

use of steroids would be helpful with this disease.

We want to put the G- tube in but Miriam's doctor want to try a short

term use of steroids and then food challenges tosee if that would help before

putting her through a surgical procedure. Miriam is back to just Vivanex with

the rice she was doing well for a short time and even having normalish stools

but then she started having stomache aches and diareah and she herself wanted to

stop eating b/c it hurt her tummy. Even now that she is on just vivanes now 10

days she doesn't have the stomache aches but her stools are still completely

watery. My big problem here is that the doctors here don't have so much

experience with this disease adn they don't know how to guide me.

I am still trying to find a doctor that will take an interest in my son

Yisroel. Miriam's doctor basically said he doesn't want to take care of him b/c

the insurance won't pay for him for my son. So Yisroel is going to be 2 in a few

weeks and he doesn't know how to swallow and he can only take mother's milk I

don't know about anything else until he learns how to eat (swallow things with

texture) he also has no desire to eat as well. Dr. Sampson suggested doing a

swallow study on him but I can't find a doctor who is interested in doing one on

him. Its so frustrating I feel I don't know what to do for them when no doctor

seems to really want to help.

If someone could give me some guidence about the steroids as soon as

possible I am supposed to get back to the doctor soon.

Thank You

Shana ( mom to Miriam 3 1/2 EG . food allergies, NG-tube, Yisroel 23

months food allergies , asthma , and problems swallowing, Tehilla 7 jealous)

[Guest guest]

[eosinophilic gastroenteritis] steroids

Has anyone ever had a cure or a tremendous improvment from being on

steroids. If yes, how long did you have to be on it . Do you think short term

use of steroids would be helpful with this disease.

We want to put the G- tube in but Miriam's doctor want to try a short term

use of steroids and then food challenges tosee if that would help before putting

her through a surgical procedure. Miriam is back to just Vivanex with the rice

she was doing well for a short time and even having normalish stools but then

she started having stomache aches and diareah and she herself wanted to stop

eating b/c it hurt her tummy. Even now that she is on just vivanes now 10 days

she doesn't have the stomache aches but her stools are still completely watery.

My big problem here is that the doctors here don't have so much experience with

this disease adn they don't know how to guide me.

I am still trying to find a doctor that will take an interest in my son

Yisroel. Miriam's doctor basically said he doesn't want to take care of him b/c

the insurance won't pay for him for my son. So Yisroel is going to be 2 in a few

weeks and he doesn't know how to swallow and he can only take mother's milk I

don't know about anything else until he learns how to eat (swallow things with

texture) he also has no desire to eat as well. Dr. Sampson suggested doing a

swallow study on him but I can't find a doctor who is interested in doing one on

him. Its so frustrating I feel I don't know what to do for them when no doctor

seems to really want to help.

If someone could give me some guidence about the steroids as soon as

possible I am supposed to get back to the doctor soon.

Thank You

Shana ( mom to Miriam 3 1/2 EG . food allergies, NG-tube, Yisroel 23 months

food allergies , asthma , and problems swallowing, Tehilla 7 jealous)

Hi this is Tina and my daughter who is 3 is on steroids. They have helped

so much that I can't even put it in to words. In Jan my daughter only weighted

22lbs and now she weighs 35. She has even grown 21/2 inches. In jan she was in

2% for weight and not even on the charts for height. I say go for the steroids.

what have you got to lose? There are side effects for the prenisone such as

swelling, mood swings, and hunger. (all the time) but in our case they saved

Alyssa's life. her drs words. they arenot a cure but they mask the symptoms

such as pain and vomiting until they come up with a nother answer. if you have

any other questions I will try to answer them the best I can (due to ALyssa).

Good luck!!!! Tina

[Guest guest]

[eosinophilic gastroenteritis] steroids

Has anyone ever had a cure or a tremendous improvment from being on

steroids. If yes, how long did you have to be on it . Do you think short term

use of steroids would be helpful with this disease.

We want to put the G- tube in but Miriam's doctor want to try a short term

use of steroids and then food challenges tosee if that would help before putting

her through a surgical procedure. Miriam is back to just Vivanex with the rice

she was doing well for a short time and even having normalish stools but then

she started having stomache aches and diareah and she herself wanted to stop

eating b/c it hurt her tummy. Even now that she is on just vivanes now 10 days

she doesn't have the stomache aches but her stools are still completely watery.

My big problem here is that the doctors here don't have so much experience with

this disease adn they don't know how to guide me.

I am still trying to find a doctor that will take an interest in my son

Yisroel. Miriam's doctor basically said he doesn't want to take care of him b/c

the insurance won't pay for him for my son. So Yisroel is going to be 2 in a few

weeks and he doesn't know how to swallow and he can only take mother's milk I

don't know about anything else until he learns how to eat (swallow things with

texture) he also has no desire to eat as well. Dr. Sampson suggested doing a

swallow study on him but I can't find a doctor who is interested in doing one on

him. Its so frustrating I feel I don't know what to do for them when no doctor

seems to really want to help.

If someone could give me some guidence about the steroids as soon as

possible I am supposed to get back to the doctor soon.

Thank You

Shana ( mom to Miriam 3 1/2 EG . food allergies, NG-tube, Yisroel 23 months

food allergies , asthma , and problems swallowing, Tehilla 7 jealous)

Hi this is Tina and my daughter who is 3 is on steroids. They have helped

so much that I can't even put it in to words. In Jan my daughter only weighted

22lbs and now she weighs 35. She has even grown 21/2 inches. In jan she was in

2% for weight and not even on the charts for height. I say go for the steroids.

what have you got to lose? There are side effects for the prenisone such as

swelling, mood swings, and hunger. (all the time) but in our case they saved

Alyssa's life. her drs words. they arenot a cure but they mask the symptoms

such as pain and vomiting until they come up with a nother answer. if you have

any other questions I will try to answer them the best I can (due to ALyssa).

Good luck!!!! Tina

[Guest guest]

Shana --

I had a thought (actually it was more light a lightening bolt striking me) when

I was out after talking to you this afternoon.

When we first went on steroids, the doc thought it might be a long term

solution... that maybe one or two of the kids could just be treated with a short

course of steroids when their symptoms flared up. That is, in fact, what we

plan to do with my oldest (who is currently asymptomatic and not being treated).

When he has his next flare up, we will give him an 8-week course of high dose

steroids and then stop them again.

Maybe this is what your doc has in mind. If so, it might be worth a try. It

may not work, but you will never know if you don't give it a shot.

steph

[Guest guest]

Shana --

I had a thought (actually it was more light a lightening bolt striking me) when

I was out after talking to you this afternoon.

When we first went on steroids, the doc thought it might be a long term

solution... that maybe one or two of the kids could just be treated with a short

course of steroids when their symptoms flared up. That is, in fact, what we

plan to do with my oldest (who is currently asymptomatic and not being treated).

When he has his next flare up, we will give him an 8-week course of high dose

steroids and then stop them again.

Maybe this is what your doc has in mind. If so, it might be worth a try. It

may not work, but you will never know if you don't give it a shot.

steph

[Guest guest]

Shana-

It was greating talking to you today. If Miriam goes the steroid route, would

she still need the NG tube? I would think so until her food consumption picks

up tremendously. Isn't getting the G tube, just as much for her psychologically

as well as physically? Could you get the G tube and still try the steroids. At

least she wouldn't have the NG tube, while you are trying to find foods she can

eat. Just another thought after the 5 kids left my house today and my two went

to bed here. I will talk to you soon. Love, Phyllis

[Guest guest]

Shana-

It was greating talking to you today. If Miriam goes the steroid route, would

she still need the NG tube? I would think so until her food consumption picks

up tremendously. Isn't getting the G tube, just as much for her psychologically

as well as physically? Could you get the G tube and still try the steroids. At

least she wouldn't have the NG tube, while you are trying to find foods she can

eat. Just another thought after the 5 kids left my house today and my two went

to bed here. I will talk to you soon. Love, Phyllis

[Guest guest]

our experience (ALL of us) on the high dose steroids was an intense hunger and

after about 5 days.... NO SYMPTOMS. We could and did eat anything in sight. I

gained 60 lbs!

It works and it works great. If you can get by doing this just intermittently

it may be an answer.

(eos esophagitis/GT, former TPNr)

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

Re: [eosinophilic gastroenteritis] steroids

ÿþ

Shana-

It was greating talking to you today. If Miriam goes the steroid route,

would she still need the NG tube? I would think so until her food consumption

picks up tremendously. Isn't getting the G tube, just as much for her

psychologically as well as physically? Could you get the G tube and still try

the steroids. At least she wouldn't have the NG tube, while you are trying to

find foods she can eat. Just another thought after the 5 kids left my house

today and my two went to bed here. I will talk to you soon. Love, Phyllis

[Guest guest]

our experience (ALL of us) on the high dose steroids was an intense hunger and

after about 5 days.... NO SYMPTOMS. We could and did eat anything in sight. I

gained 60 lbs!

It works and it works great. If you can get by doing this just intermittently

it may be an answer.

(eos esophagitis/GT, former TPNr)

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

Re: [eosinophilic gastroenteritis] steroids

ÿþ

Shana-

It was greating talking to you today. If Miriam goes the steroid route,

would she still need the NG tube? I would think so until her food consumption

picks up tremendously. Isn't getting the G tube, just as much for her

psychologically as well as physically? Could you get the G tube and still try

the steroids. At least she wouldn't have the NG tube, while you are trying to

find foods she can eat. Just another thought after the 5 kids left my house

today and my two went to bed here. I will talk to you soon. Love, Phyllis

[Guest guest]

In a message dated 6/22/99, 4:19:49 PM, eosinophilic gastroenteritis (AT) onelist (DOT) com writes:

<<

When we first went on steroids, the doc thought it might be a long term

solution... that maybe one or two of the kids could just be treated with a

short course of steroids when their symptoms flared up. >>

This is what the doctor is hoping we may be able to do with . He has

been on the steroids for about 6 weeks and is doing great. He is actually

getting fat. Last night was the first time he had complained of pain in a

few weeks. I don't really think he was even having any pain, it was close to

time to go to his school show and I think he just was looking for an excuse

to leave the table.

His diet still remains limited but he eats constantly. He is definitely

responding better to the steroids than he did in 1997.

We are probably going to start to taper down this week (I am waiting to hear

from the GI). I will be curious to see how he does?

Jen

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

[Guest guest]

In a message dated 6/22/99, 4:19:49 PM, eosinophilic gastroenteritis (AT) onelist (DOT) com writes:

<<

When we first went on steroids, the doc thought it might be a long term

solution... that maybe one or two of the kids could just be treated with a

short course of steroids when their symptoms flared up. >>

This is what the doctor is hoping we may be able to do with . He has

been on the steroids for about 6 weeks and is doing great. He is actually

getting fat. Last night was the first time he had complained of pain in a

few weeks. I don't really think he was even having any pain, it was close to

time to go to his school show and I think he just was looking for an excuse

to leave the table.

His diet still remains limited but he eats constantly. He is definitely

responding better to the steroids than he did in 1997.

We are probably going to start to taper down this week (I am waiting to hear

from the GI). I will be curious to see how he does?

Jen

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

[Guest guest]

We decided to put Miriam on prednisone and try it out. The doctor wants to try

her out for about 8 weeks , then she will be weaned off and he is hoping that

she will be able to continue eating . Has anyone had sucess in that area (go on

and when weaned off was able to eat ). The hardest part of it is that they want

to hospitalize her while putting her on food and monitor her. They want for

about 2 weeks she goes in on Monday. She started on the prednisone yesterday she

weighs 15 kg and they put her on 30 mg a day is that to high do they know what

they are doing. I read on this list that they are supposed to have 1mg per kg so

she should be having 15mg according to that. Is this to high could it cause her

any damage putting her on such a high dosage. If someone could answer me back as

soon as possible of what you think my husband and I are worried should we

continue or not.

Shana (mom to Miriam 3 1/2 EG, food allergies to peanuts,soy,wheat,and all

legumes, NG tube, Yisroel 23 months food allergies, asthma , problems with

swallowing,Tehilla 7 jealous)

Re: [eosinophilic gastroenteritis] steroids

Shana --

I had a thought (actually it was more light a lightening bolt striking me)

when I was out after talking to you this afternoon.

When we first went on steroids, the doc thought it might be a long term

solution... that maybe one or two of the kids could just be treated with a short

course of steroids when their symptoms flared up. That is, in fact, what we

plan to do with my oldest (who is currently asymptomatic and not being treated).

When he has his next flare up, we will give him an 8-week course of high dose

steroids and then stop them again.

Maybe this is what your doc has in mind. If so, it might be worth a try.

It may not work, but you will never know if you don't give it a shot.

steph

[Guest guest]

We decided to put Miriam on prednisone and try it out. The doctor wants to try

her out for about 8 weeks , then she will be weaned off and he is hoping that

she will be able to continue eating . Has anyone had sucess in that area (go on

and when weaned off was able to eat ). The hardest part of it is that they want

to hospitalize her while putting her on food and monitor her. They want for

about 2 weeks she goes in on Monday. She started on the prednisone yesterday she

weighs 15 kg and they put her on 30 mg a day is that to high do they know what

they are doing. I read on this list that they are supposed to have 1mg per kg so

she should be having 15mg according to that. Is this to high could it cause her

any damage putting her on such a high dosage. If someone could answer me back as

soon as possible of what you think my husband and I are worried should we

continue or not.

Shana (mom to Miriam 3 1/2 EG, food allergies to peanuts,soy,wheat,and all

legumes, NG tube, Yisroel 23 months food allergies, asthma , problems with

swallowing,Tehilla 7 jealous)

Re: [eosinophilic gastroenteritis] steroids

Shana --

I had a thought (actually it was more light a lightening bolt striking me)

when I was out after talking to you this afternoon.

When we first went on steroids, the doc thought it might be a long term

solution... that maybe one or two of the kids could just be treated with a short

course of steroids when their symptoms flared up. That is, in fact, what we

plan to do with my oldest (who is currently asymptomatic and not being treated).

When he has his next flare up, we will give him an 8-week course of high dose

steroids and then stop them again.

Maybe this is what your doc has in mind. If so, it might be worth a try.

It may not work, but you will never know if you don't give it a shot.

steph

[Guest guest]

Shana,

I was on that high of a dose. I wouldn't keep her that high for more than 8

weeks, but for 8 weeks, it is DEFINITELY enough to determine if it will work.

Some docs say 1.5-2.0mg/kg which is what she is getting. THere are several

cases (in the literature) that have been treated with intermittent steroids.

Let's hope it will work for your daughter too. DO they want to hospitalize her

ON prednisone for the food trials? I would think they would need to do this

only when she comes OFF prednisone. I would think she would be fine on the

prednisone. But then again, maybe they aren't convinced the pred will work.

This may work for you. I'm keeping my fingers crossed.

(eos esophagitis/GT, former TPNr)

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

[Guest guest]

Shana,

I was on that high of a dose. I wouldn't keep her that high for more than 8

weeks, but for 8 weeks, it is DEFINITELY enough to determine if it will work.

Some docs say 1.5-2.0mg/kg which is what she is getting. THere are several

cases (in the literature) that have been treated with intermittent steroids.

Let's hope it will work for your daughter too. DO they want to hospitalize her

ON prednisone for the food trials? I would think they would need to do this

only when she comes OFF prednisone. I would think she would be fine on the

prednisone. But then again, maybe they aren't convinced the pred will work.

This may work for you. I'm keeping my fingers crossed.

(eos esophagitis/GT, former TPNr)

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

[Guest guest]

Hi Shana-

Good luck with the steroids. Does this mean the tube will come out? Will you

stay with her in the hospital? What about the other kids? Keep in touch and

let us know how it is going.

Love, Phyllis

[Guest guest]

Hi Shana-

Good luck with the steroids. Does this mean the tube will come out? Will you

stay with her in the hospital? What about the other kids? Keep in touch and

let us know how it is going.

Love, Phyllis

[Guest guest]

,

You had once mentioned that you have a list of side effects of steroids if you

could send it to me I'd greatly appreciate it, my husband and I want to decide

if we should continue Miriam on the steroids or not.my e-mail address is

selias@...

My mother mentioned that you haven't been in touch with her about the pediatric

vivanex are you still interested in it. She has at least 6 cases that she got

free. Her e-mail address is dianegp1@... and her home phone number is

414- 540-1161. If you are not interested we will try and find someone else it

would be a shame to go to waste.

Shana (mom to Miriam 4 EG,food allergies,Yisroel,2 1/2 asthma foodallergies,

possible EG,Tehilla 7)

[Guest guest]

Hey Steph.....as soon as I sent the first email I immediately went and sent

another one with immuno suppressant and it took an hour to get through to

the list!!!! LOL

Tell me more about the steroid-induced heart disease. I am very interested

or do you have any links. Of course as Spencer is 2 and above on the

steroids.

[eosinophilic gastroenteritis] Steroids

>

>

> >

> >

> >Hi everyone,

> >

> >Boy is this list quite. I am happy to say that the flu has flown by our

> >house. It took about 8-10 days to get outta here but it's pretty much

> gone.

> >Spencer is feeling much better but mom here is still dragging her feet

> quite

> >a bit.

> >

> >I remember that I was going to post some side effects of chronic steroid

> >use. I can't find the email that Spencer's doctor wrote that contained a

> >lot of information on steroids, but these are the big things that I

> >remember.

> >

> >1. Stunt in growth

> >2. Cataracts

> >3. Hip and joint problems (Mainly hip)

> >4. Thin and brittle bones

> >5. Hypoglycemia

> >6. Pituitary glad shutting almost completely down

> >7. In the event of any type of trauma (Even high fever 103 or so and

> above,

> >surgery, accident, broken bones etc) Double or triple the amount of

> steroids

> >are needed to be given in order for the body to function without serious

> >harm. This presents a problem if the child is in an accident and one of

> the

> >parents are not around or the parents are also involved. I would

recommend

> >either a medical band or paper in the car and house letting whom ever

know

> >how much and for how long the person has been on steroids.

> >8. Steroid weight, (Spencer never seems to gain weight from

this)bloated

> >stomach and cheeks

> >9. Increase in appetite

> >10. Terrible problem in healing from surgeries and broken bones

> >

> >Spencer has experienced all except cataracts, increase in appetite but we

> >still need to get his eyes checked.

> >

> >When on steroids chronically (our) doctor recommends a yearly check up

with

> >an eye doctor and orthopedic doc for evaluation of the bones.

> >

> >I am sure there are a lot more that I missed, but these are some of the

> >bigger more often seen side effects of steroids.

> >

> >Anyone add some that I haven't listed......

> >

> >

> >

> >

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

[Guest guest]

In a message dated 1/14/00 9:12:09 AM Eastern Standard Time,

harlowsteph@... writes:

<< we have often wondered if his small stature is the result of his IEE. >>

Though and I are not tall, is very short for his age. The docs

think that at the rate he is growing he will only be 5'3 " or 5'4 " tall when

he reaches full height. I believe this is directly linked to his EE.

Jen M.