RE: meds

[Guest guest]

We took BJ off the Prednisone and have kept him off against doctors wishes

but do not do it quickly if you do. Also, seek other opinions if you are

not happy with her treatment. For us, that meant going to other states.

You have to wean the prednisone very slowly but I would see someone else

first.

People are always commenting on BJ and how he looks so pale and sickly.

Don't you love it? Hardly no one comments when he looks better.

Dawn-KS, mommy to Dakota, 7, aka BJ, 4, (eosinophilic

gastroenteritis, Nissen, asthma, reflux), and mommy to Mackenzie Marie

andrya born 11/20/99

Re: [eosinophilic gastroenteritis] Meds

> From: Ssrams@...

>

> Hi this is again and finally Dr s called and said that he wants

Alyssa

> to have only 10oz of water aday and for her to have gatoraid or pedalite

the

> rest of the time well that was at 2:00 and it is 5:18 she has went through

> 64oz of gatoraid, this can't be normal? even before she she wouldn't

drink

> this much and now she wants more so should I give it to her? I am so

tired

> or Drs not calling back and being in such a hurry that you can't get all

the

> questions out that you need too. I also would like to take her off the

> prednisone but I was told by a friend who is a nurse that if you take a

child

> off a medication that a DR deemed necessary to live and you with hold that

> and something happens the parent is held responsible. So Do we continue

and

> say ok thhis may help her some but is damaging her insides in the long run

> what is better? I am so tired of all this there are times I wonder why her

> WHY ALYSSA? what not some parent who doesn't care or did drugs or other

> terrible things. I know it is self pity. but still. Some parents at our

> church have asked how do you do this don't you get tired of all the DR

> visits, hospital stays and so on I just want to yell you don't have a

choice

> you do what you have to, to us this is the norm, it has become such a

routine

> that you forget that is not normal for a child to be sick to sleep most of

> the time, to cry alot to to look like hell warmed over I guess that has to

be

> the worst One parent said to me " GOSH SHE LOOKS TERRIBLE I CAN'T BELIEVE

> THIS IS THE SAME ALYSSA " I just wanted to scream you know I know she

looks

> bad but I have to live with this every day couldn't you be nice and just

say

> nice to see you. well that is enough venting thanks for letting me get

some

> steam out. By the way has any one gone against DR wishes? I have been

> thinking about stopping all treatment and just going back to square one

just

> to see how she does? any input?

> Tina Mom to Alyssa

>

> >

[Guest guest]

We took BJ off the Prednisone and have kept him off against doctors wishes

but do not do it quickly if you do. Also, seek other opinions if you are

not happy with her treatment. For us, that meant going to other states.

You have to wean the prednisone very slowly but I would see someone else

first.

People are always commenting on BJ and how he looks so pale and sickly.

Don't you love it? Hardly no one comments when he looks better.

Dawn-KS, mommy to Dakota, 7, aka BJ, 4, (eosinophilic

gastroenteritis, Nissen, asthma, reflux), and mommy to Mackenzie Marie

andrya born 11/20/99

Re: [eosinophilic gastroenteritis] Meds

> From: Ssrams@...

>

> Hi this is again and finally Dr s called and said that he wants

Alyssa

> to have only 10oz of water aday and for her to have gatoraid or pedalite

the

> rest of the time well that was at 2:00 and it is 5:18 she has went through

> 64oz of gatoraid, this can't be normal? even before she she wouldn't

drink

> this much and now she wants more so should I give it to her? I am so

tired

> or Drs not calling back and being in such a hurry that you can't get all

the

> questions out that you need too. I also would like to take her off the

> prednisone but I was told by a friend who is a nurse that if you take a

child

> off a medication that a DR deemed necessary to live and you with hold that

> and something happens the parent is held responsible. So Do we continue

and

> say ok thhis may help her some but is damaging her insides in the long run

> what is better? I am so tired of all this there are times I wonder why her

> WHY ALYSSA? what not some parent who doesn't care or did drugs or other

> terrible things. I know it is self pity. but still. Some parents at our

> church have asked how do you do this don't you get tired of all the DR

> visits, hospital stays and so on I just want to yell you don't have a

choice

> you do what you have to, to us this is the norm, it has become such a

routine

> that you forget that is not normal for a child to be sick to sleep most of

> the time, to cry alot to to look like hell warmed over I guess that has to

be

> the worst One parent said to me " GOSH SHE LOOKS TERRIBLE I CAN'T BELIEVE

> THIS IS THE SAME ALYSSA " I just wanted to scream you know I know she

looks

> bad but I have to live with this every day couldn't you be nice and just

say

> nice to see you. well that is enough venting thanks for letting me get

some

> steam out. By the way has any one gone against DR wishes? I have been

> thinking about stopping all treatment and just going back to square one

just

> to see how she does? any input?

> Tina Mom to Alyssa

>

> >

[Guest guest]

Tina, can she be put in the hospital & receive i.v. fluids to get her

rehydrated? I know you are so tired & exhausted mentally & physically. I'm

in Oklahoma. Where are you located at? If I can help with anything that you

can think of please call me . From the things that you have

described, it definitely does not sound right... Can you get another opinion

from another GI? I have gone against one doctor's orders, but had my ped

backing me up on it & was following her orders. Again, I'm sorry for what

you & Alyssa are going through. I'm here to listen if you need to...

Rhonda, mom to & Haven

Re: [eosinophilic gastroenteritis] Meds

>From: Ssrams@...

>

>Hi this is again and finally Dr s called and said that he wants

Alyssa

>to have only 10oz of water aday and for her to have gatoraid or pedalite

the

>rest of the time well that was at 2:00 and it is 5:18 she has went through

>64oz of gatoraid, this can't be normal? even before she she wouldn't drink

>this much and now she wants more so should I give it to her? I am so tired

>or Drs not calling back and being in such a hurry that you can't get all

the

>questions out that you need too. I also would like to take her off the

>prednisone but I was told by a friend who is a nurse that if you take a

child

>off a medication that a DR deemed necessary to live and you with hold that

>and something happens the parent is held responsible. So Do we continue

and

>say ok thhis may help her some but is damaging her insides in the long run

>what is better? I am so tired of all this there are times I wonder why her

>WHY ALYSSA? what not some parent who doesn't care or did drugs or other

>terrible things. I know it is self pity. but still. Some parents at our

>church have asked how do you do this don't you get tired of all the DR

>visits, hospital stays and so on I just want to yell you don't have a

choice

>you do what you have to, to us this is the norm, it has become such a

routine

>that you forget that is not normal for a child to be sick to sleep most of

>the time, to cry alot to to look like hell warmed over I guess that has to

be

>the worst One parent said to me " GOSH SHE LOOKS TERRIBLE I CAN'T BELIEVE

>THIS IS THE SAME ALYSSA " I just wanted to scream you know I know she looks

>bad but I have to live with this every day couldn't you be nice and just

say

>nice to see you. well that is enough venting thanks for letting me get some

>steam out. By the way has any one gone against DR wishes? I have been

>thinking about stopping all treatment and just going back to square one

just

>to see how she does? any input?

>Tina Mom to Alyssa

>

>>

[Guest guest]

Tina, can she be put in the hospital & receive i.v. fluids to get her

rehydrated? I know you are so tired & exhausted mentally & physically. I'm

in Oklahoma. Where are you located at? If I can help with anything that you

can think of please call me . From the things that you have

described, it definitely does not sound right... Can you get another opinion

from another GI? I have gone against one doctor's orders, but had my ped

backing me up on it & was following her orders. Again, I'm sorry for what

you & Alyssa are going through. I'm here to listen if you need to...

Rhonda, mom to & Haven

Re: [eosinophilic gastroenteritis] Meds

>From: Ssrams@...

>

>Hi this is again and finally Dr s called and said that he wants

Alyssa

>to have only 10oz of water aday and for her to have gatoraid or pedalite

the

>rest of the time well that was at 2:00 and it is 5:18 she has went through

>64oz of gatoraid, this can't be normal? even before she she wouldn't drink

>this much and now she wants more so should I give it to her? I am so tired

>or Drs not calling back and being in such a hurry that you can't get all

the

>questions out that you need too. I also would like to take her off the

>prednisone but I was told by a friend who is a nurse that if you take a

child

>off a medication that a DR deemed necessary to live and you with hold that

>and something happens the parent is held responsible. So Do we continue

and

>say ok thhis may help her some but is damaging her insides in the long run

>what is better? I am so tired of all this there are times I wonder why her

>WHY ALYSSA? what not some parent who doesn't care or did drugs or other

>terrible things. I know it is self pity. but still. Some parents at our

>church have asked how do you do this don't you get tired of all the DR

>visits, hospital stays and so on I just want to yell you don't have a

choice

>you do what you have to, to us this is the norm, it has become such a

routine

>that you forget that is not normal for a child to be sick to sleep most of

>the time, to cry alot to to look like hell warmed over I guess that has to

be

>the worst One parent said to me " GOSH SHE LOOKS TERRIBLE I CAN'T BELIEVE

>THIS IS THE SAME ALYSSA " I just wanted to scream you know I know she looks

>bad but I have to live with this every day couldn't you be nice and just

say

>nice to see you. well that is enough venting thanks for letting me get some

>steam out. By the way has any one gone against DR wishes? I have been

>thinking about stopping all treatment and just going back to square one

just

>to see how she does? any input?

>Tina Mom to Alyssa

>

>>

[Guest guest]

Tina, can she be put in the hospital & receive i.v. fluids to get her

rehydrated? I know you are so tired & exhausted mentally & physically. I'm

in Oklahoma. Where are you located at? If I can help with anything that you

can think of please call me . From the things that you have

described, it definitely does not sound right... Can you get another opinion

from another GI? I have gone against one doctor's orders, but had my ped

backing me up on it & was following her orders. Again, I'm sorry for what

you & Alyssa are going through. I'm here to listen if you need to...

Rhonda, mom to & Haven

Re: [eosinophilic gastroenteritis] Meds

>From: Ssrams@...

>

>Hi this is again and finally Dr s called and said that he wants

Alyssa

>to have only 10oz of water aday and for her to have gatoraid or pedalite

the

>rest of the time well that was at 2:00 and it is 5:18 she has went through

>64oz of gatoraid, this can't be normal? even before she she wouldn't drink

>this much and now she wants more so should I give it to her? I am so tired

>or Drs not calling back and being in such a hurry that you can't get all

the

>questions out that you need too. I also would like to take her off the

>prednisone but I was told by a friend who is a nurse that if you take a

child

>off a medication that a DR deemed necessary to live and you with hold that

>and something happens the parent is held responsible. So Do we continue

and

>say ok thhis may help her some but is damaging her insides in the long run

>what is better? I am so tired of all this there are times I wonder why her

>WHY ALYSSA? what not some parent who doesn't care or did drugs or other

>terrible things. I know it is self pity. but still. Some parents at our

>church have asked how do you do this don't you get tired of all the DR

>visits, hospital stays and so on I just want to yell you don't have a

choice

>you do what you have to, to us this is the norm, it has become such a

routine

>that you forget that is not normal for a child to be sick to sleep most of

>the time, to cry alot to to look like hell warmed over I guess that has to

be

>the worst One parent said to me " GOSH SHE LOOKS TERRIBLE I CAN'T BELIEVE

>THIS IS THE SAME ALYSSA " I just wanted to scream you know I know she looks

>bad but I have to live with this every day couldn't you be nice and just

say

>nice to see you. well that is enough venting thanks for letting me get some

>steam out. By the way has any one gone against DR wishes? I have been

>thinking about stopping all treatment and just going back to square one

just

>to see how she does? any input?

>Tina Mom to Alyssa

>

>>

[Guest guest]

Rhonda,

Where in OK are you? We took BJ to Oklahoma City Children's Hospital (not

sure this is the name) and saw a GI doctor there when he was one.

Dawn-KS, mommy to Dakota, 7, aka BJ, 4, (eosinophilic

gastroenteritis, Nissen, asthma, reflux), and mommy to Mackenzie Marie

andrya born 11/20/99

Re: [eosinophilic gastroenteritis] Meds

>

>

> >From: Ssrams@...

> >

> >Hi this is again and finally Dr s called and said that he wants

> Alyssa

> >to have only 10oz of water aday and for her to have gatoraid or pedalite

> the

> >rest of the time well that was at 2:00 and it is 5:18 she has went

through

> >64oz of gatoraid, this can't be normal? even before she she wouldn't

drink

> >this much and now she wants more so should I give it to her? I am so

tired

> >or Drs not calling back and being in such a hurry that you can't get all

> the

> >questions out that you need too. I also would like to take her off the

> >prednisone but I was told by a friend who is a nurse that if you take a

> child

> >off a medication that a DR deemed necessary to live and you with hold

that

> >and something happens the parent is held responsible. So Do we continue

> and

> >say ok thhis may help her some but is damaging her insides in the long

run

> >what is better? I am so tired of all this there are times I wonder why

her

> >WHY ALYSSA? what not some parent who doesn't care or did drugs or

other

> >terrible things. I know it is self pity. but still. Some parents at our

> >church have asked how do you do this don't you get tired of all the DR

> >visits, hospital stays and so on I just want to yell you don't have a

> choice

> >you do what you have to, to us this is the norm, it has become such a

> routine

> >that you forget that is not normal for a child to be sick to sleep most

of

> >the time, to cry alot to to look like hell warmed over I guess that has

to

> be

> >the worst One parent said to me " GOSH SHE LOOKS TERRIBLE I CAN'T BELIEVE

> >THIS IS THE SAME ALYSSA " I just wanted to scream you know I know she

looks

> >bad but I have to live with this every day couldn't you be nice and just

> say

> >nice to see you. well that is enough venting thanks for letting me get

some

> >steam out. By the way has any one gone against DR wishes? I have been

> >thinking about stopping all treatment and just going back to square one

> just

> >to see how she does? any input?

> >Tina Mom to Alyssa

> >

> >>

>

> >

[Guest guest]

Dawn, I'm in Mustang, OK. It is about 15 minutes West of Oklahoma City.

About 30 minutes away from Children's Hospital. What GI did you see at

Children's?

Also, congratulations on Mackenzie Marie arriving healthy & safely. Sorry

it's so late. I was watching to see when you posted & new that she got here

safely. I'm so glad all of our prayers were answered. Take care, Rhonda,

mom to 2, & Haven 5

Re: [eosinophilic gastroenteritis] Meds

>

>

>Rhonda,

>Where in OK are you? We took BJ to Oklahoma City Children's Hospital (not

>sure this is the name) and saw a GI doctor there when he was one.

>

>Dawn-KS, mommy to Dakota, 7, aka BJ, 4, (eosinophilic

>gastroenteritis, Nissen, asthma, reflux), and mommy to Mackenzie Marie

>andrya born 11/20/99

> Re: [eosinophilic gastroenteritis] Meds

>>

>>

>> >From: Ssrams@...

>> >

>> >Hi this is again and finally Dr s called and said that he wants

>> Alyssa

>> >to have only 10oz of water aday and for her to have gatoraid or pedalite

>> the

>> >rest of the time well that was at 2:00 and it is 5:18 she has went

>through

>> >64oz of gatoraid, this can't be normal? even before she she wouldn't

>drink

>> >this much and now she wants more so should I give it to her? I am so

>tired

>> >or Drs not calling back and being in such a hurry that you can't get all

>> the

>> >questions out that you need too. I also would like to take her off the

>> >prednisone but I was told by a friend who is a nurse that if you take a

>> child

>> >off a medication that a DR deemed necessary to live and you with hold

>that

>> >and something happens the parent is held responsible. So Do we continue

>> and

>> >say ok thhis may help her some but is damaging her insides in the long

>run

>> >what is better? I am so tired of all this there are times I wonder why

>her

>> >WHY ALYSSA? what not some parent who doesn't care or did drugs or

>other

>> >terrible things. I know it is self pity. but still. Some parents at our

>> >church have asked how do you do this don't you get tired of all the DR

>> >visits, hospital stays and so on I just want to yell you don't have a

>> choice

>> >you do what you have to, to us this is the norm, it has become such a

>> routine

>> >that you forget that is not normal for a child to be sick to sleep most

>of

>> >the time, to cry alot to to look like hell warmed over I guess that has

>to

>> be

>> >the worst One parent said to me " GOSH SHE LOOKS TERRIBLE I CAN'T

BELIEVE

>> >THIS IS THE SAME ALYSSA " I just wanted to scream you know I know she

>looks

>> >bad but I have to live with this every day couldn't you be nice and just

>> say

>> >nice to see you. well that is enough venting thanks for letting me get

>some

>> >steam out. By the way has any one gone against DR wishes? I have been

>> >thinking about stopping all treatment and just going back to square one

>> just

>> >to see how she does? any input?

>> >Tina Mom to Alyssa

>> >

>> >>

>>

>> >

>

>>

[Guest guest]

In a message dated 12/2/99 8:31:40 AM Central Standard Time,

jones5@... writes:

<< he be put in the hospital & receive i.v. fluids to get her Our home

health nurse was going to talk to the ped on call for out normal ped. She was

talking about keeping her here and doing it. may be the problem is that he

doesn't want to go aganist the GI dr and he doesn't seem too concerned, after

all the drinking yesterday Alyssa started throwing up and she bloated huge

and was crying well our nurse tried to call the Gi dr he didn't return her

call I tried and he didn't call me back either so I had to un hook her for 4

hrs and just wait it out and hoped I wasn't going to have to take her to the

ER that ticks me off big time

> >> rehydrated? I know you are so tired & exhausted mentally & physically.

> >I'm

> >> in Oklahoma. Where are you located at? I live in Sherman Texas I think

I asked you before where in OK? I live 10 min for the border of OK. If I

can help with anything

that

> >you

> >> can think of please call me . From the things that you

> have

> >> described, it definitely does not sound right... Even the nurse thinks

something else is wrong Can you get another

> >opinion

> >> from another GI? Our problem is that we can't find one who will take

her case we already drive 3 1/2 hrs to the one we have I have gone against

one doctor's orders, but had my

ped

> >> backing me up on it & was following her orders. Alysssa 's ped doesn't

get back until Monday so I have to wait to talk to him then Again, I'm

sorry for

> what

> >> you & Alyssa are going through. I'm here to listen if you need

to...thanks, Tina

> >> Rhonda, mom to & Haven

> >>

> >> -----Original Mes >>

[Guest guest]

Truthfully, I can't remember his name. I know BJ was like 8-9 months and we

were there all day and he just kept asking us to go sit in the waiting room

while he thought. Then at the end of the day, he said he had no idea what

was wrong with our son and wrote him a prescription for Lomotil. We were so

mad that it took him all day to figure out he didn't have a clue. Anyways,

we came home and took the prescription to Walmart and the pharmacist refused

to fill it. He said that it specifically said not to be used for children

under 12 (BJ wasn't even one!) but never ever use in children under 6.

Needless to say, we never went back to him. Our pharmacist even called him

and he said he used it on babies as young as 6 weeks. The pharmacist said

he was going to report him.

Thanks for the congrats! She is doing really well, is back up to 5lbs even.

Dawn-KS, mommy to Dakota, 7, aka BJ, 4, (eosinophilic

gastroenteritis, Nissen, asthma, reflux), and mommy to Mackenzie Marie

andrya born 11/20/99

Re: [eosinophilic gastroenteritis] Meds

> >>

> >>

> >> >From: Ssrams@...

> >> >

> >> >Hi this is again and finally Dr s called and said that he wants

> >> Alyssa

> >> >to have only 10oz of water aday and for her to have gatoraid or

pedalite

> >> the

> >> >rest of the time well that was at 2:00 and it is 5:18 she has went

> >through

> >> >64oz of gatoraid, this can't be normal? even before she she wouldn't

> >drink

> >> >this much and now she wants more so should I give it to her? I am so

> >tired

> >> >or Drs not calling back and being in such a hurry that you can't get

all

> >> the

> >> >questions out that you need too. I also would like to take her off the

> >> >prednisone but I was told by a friend who is a nurse that if you take

a

> >> child

> >> >off a medication that a DR deemed necessary to live and you with hold

> >that

> >> >and something happens the parent is held responsible. So Do we

continue

> >> and

> >> >say ok thhis may help her some but is damaging her insides in the long

> >run

> >> >what is better? I am so tired of all this there are times I wonder why

> >her

> >> >WHY ALYSSA? what not some parent who doesn't care or did drugs or

> >other

> >> >terrible things. I know it is self pity. but still. Some parents at

our

> >> >church have asked how do you do this don't you get tired of all the DR

> >> >visits, hospital stays and so on I just want to yell you don't have a

> >> choice

> >> >you do what you have to, to us this is the norm, it has become such a

> >> routine

> >> >that you forget that is not normal for a child to be sick to sleep

most

> >of

> >> >the time, to cry alot to to look like hell warmed over I guess that

has

> >to

> >> be

> >> >the worst One parent said to me " GOSH SHE LOOKS TERRIBLE I CAN'T

> BELIEVE

> >> >THIS IS THE SAME ALYSSA " I just wanted to scream you know I know she

> >looks

> >> >bad but I have to live with this every day couldn't you be nice and

just

> >> say

> >> >nice to see you. well that is enough venting thanks for letting me get

> >some

> >> >steam out. By the way has any one gone against DR wishes? I have

been

> >> >thinking about stopping all treatment and just going back to square

one

> >> just

> >> >to see how she does? any input?

> >> >Tina Mom to Alyssa

> >> >

> >> >>

> >>

> >> >

> >

> >>

>

> >

[Guest guest]

Tina,

You need some time off and a break, even if it's just a morning breakfast by

yourself.

You cant just STOP prednisone. It has to be weaned off slowly. It is very

dangerous and can be life-threatening to just stop that drug cold turkey.

If you want to stop everything and just go back to square one, talk to your

doctor about it. If you can't talk to him or feel you aren't getting your point

across, FIND ANOTHER ONE. It is extremely important that you be able to

communicate with your doc with a rare disease like EG. I have to wonder if

Alyssa is hungry? One of my kids drinks a lot if I miss a feed or if his Gtube

total is low.. when I feed him more, he drinks less. We also found that each

kid's tolerance for feeds is a little different. One needs feeds over 1-1/2

hours via pump 4 x day, one needs 150cc boluses 4-5 times a day and the other

gets big 400cc boluses 4 times a day. I get 3 pump-fed boluses 1-1/2 hr each.

Kody used to need 18hr day feeds, we had to give him breaks off every few hours

or he would get sick.

You need to get some time away and re-charge your own batteries. Do whatever it

takes to keep yourself in good working order. Then, you will be better able to

work out a situation that works for YOU and Alyssa. I've been where you are now

with all FIVE of my kids and MYSELF all at the same time and it SUCKED (excuse

my language)... but I worked at it and now feel that life is wonderful and we

have much to be thankful for. of course, we feel better now too and that helps

a lot. What got us here was a good doctor and a good relationship and my

persistence.

HANG IN THERE. It WILL get better.

Re: [eosinophilic gastroenteritis] Meds

Hi this is again and finally Dr s called and said that he wants

Alyssa

to have only 10oz of water aday and for her to have gatoraid or pedalite the

rest of the time well that was at 2:00 and it is 5:18 she has went through

64oz of gatoraid, this can't be normal? even before she she wouldn't drink

this much and now she wants more so should I give it to her? I am so tired

or Drs not calling back and being in such a hurry that you can't get all the

questions out that you need too. I also would like to take her off the

prednisone but I was told by a friend who is a nurse that if you take a

child

off a medication that a DR deemed necessary to live and you with hold that

and something happens the parent is held responsible. So Do we continue and

say ok thhis may help her some but is damaging her insides in the long run

what is better? I am so tired of all this there are times I wonder why her

WHY ALYSSA? what not some parent who doesn't care or did drugs or other

terrible things. I know it is self pity. but still. Some parents at our

church have asked how do you do this don't you get tired of all the DR

visits, hospital stays and so on I just want to yell you don't have a choice

you do what you have to, to us this is the norm, it has become such a

routine

that you forget that is not normal for a child to be sick to sleep most of

the time, to cry alot to to look like hell warmed over I guess that has to

be

the worst One parent said to me " GOSH SHE LOOKS TERRIBLE I CAN'T BELIEVE

THIS IS THE SAME ALYSSA " I just wanted to scream you know I know she looks

bad but I have to live with this every day couldn't you be nice and just say

nice to see you. well that is enough venting thanks for letting me get some

steam out. By the way has any one gone against DR wishes? I have been

thinking about stopping all treatment and just going back to square one just

to see how she does? any input?

Tina Mom to Alyssa

[Guest guest]

In a message dated 12/2/99 1:42:42 PM Central Standard Time,

stephy8ch@... writes:

<< am originally from Plano, Texas -- I know where SHerman is. SO WE WONT

TALK FOOTBALL WILL WE? Please lets not. I will be greatful for any

drs.thanks Tina

I'll >>

[Guest guest]

Tina,

I am originally from Plano, Texas -- I know where SHerman is. SO WE WONT TALK

FOOTBALL WILL WE?

I'll ask around about good docs in the area.

Steph.

[Guest guest]

Dawn, if you plan on heading to Texas, let me know. I'm 15 minutes away

from Okla. City, & would make the drive down there w/ you. I am pretty sure

I known the doc you are talking about, but I'm not going to name names.

(I'm trying to be nice) LOL Give the kids a hug. Rhonda, mom to 2,

& Haven 5

Re: [eosinophilic gastroenteritis] Meds

>

>

>Truthfully, I can't remember his name. I know BJ was like 8-9 months and

we

>were there all day and he just kept asking us to go sit in the waiting room

>while he thought. Then at the end of the day, he said he had no idea what

>was wrong with our son and wrote him a prescription for Lomotil. We were

so

>mad that it took him all day to figure out he didn't have a clue. Anyways,

>we came home and took the prescription to Walmart and the pharmacist

refused

>to fill it. He said that it specifically said not to be used for children

>under 12 (BJ wasn't even one!) but never ever use in children under 6.

>Needless to say, we never went back to him. Our pharmacist even called him

>and he said he used it on babies as young as 6 weeks. The pharmacist said

>he was going to report him.

>

>Thanks for the congrats! She is doing really well, is back up to 5lbs

even.

>

>Dawn-KS, mommy to Dakota, 7, aka BJ, 4, (eosinophilic

>gastroenteritis, Nissen, asthma, reflux), and mommy to Mackenzie Marie

>andrya born 11/20/99

> Re: [eosinophilic gastroenteritis] Meds

>> >>

>> >>

>> >> >From: Ssrams@...

>> >> >

>> >> >Hi this is again and finally Dr s called and said that he wants

>> >> Alyssa

>> >> >to have only 10oz of water aday and for her to have gatoraid or

>pedalite

>> >> the

>> >> >rest of the time well that was at 2:00 and it is 5:18 she has went

>> >through

>> >> >64oz of gatoraid, this can't be normal? even before she she wouldn't

>> >drink

>> >> >this much and now she wants more so should I give it to her? I am so

>> >tired

>> >> >or Drs not calling back and being in such a hurry that you can't get

>all

>> >> the

>> >> >questions out that you need too. I also would like to take her off

the

>> >> >prednisone but I was told by a friend who is a nurse that if you take

>a

>> >> child

>> >> >off a medication that a DR deemed necessary to live and you with hold

>> >that

>> >> >and something happens the parent is held responsible. So Do we

>continue

>> >> and

>> >> >say ok thhis may help her some but is damaging her insides in the

long

>> >run

>> >> >what is better? I am so tired of all this there are times I wonder

why

>> >her

>> >> >WHY ALYSSA? what not some parent who doesn't care or did drugs or

>> >other

>> >> >terrible things. I know it is self pity. but still. Some parents at

>our

>> >> >church have asked how do you do this don't you get tired of all the

DR

>> >> >visits, hospital stays and so on I just want to yell you don't have a

>> >> choice

>> >> >you do what you have to, to us this is the norm, it has become such a

>> >> routine

>> >> >that you forget that is not normal for a child to be sick to sleep

>most

>> >of

>> >> >the time, to cry alot to to look like hell warmed over I guess that

>has

>> >to

>> >> be

>> >> >the worst One parent said to me " GOSH SHE LOOKS TERRIBLE I CAN'T

>> BELIEVE

>> >> >THIS IS THE SAME ALYSSA " I just wanted to scream you know I know she

>> >looks

>> >> >bad but I have to live with this every day couldn't you be nice and

>just

>> >> say

>> >> >nice to see you. well that is enough venting thanks for letting me

get

>> >some

>> >> >steam out. By the way has any one gone against DR wishes? I have

>been

>> >> >thinking about stopping all treatment and just going back to square

>one

>> >> just

>> >> >to see how she does? any input?

>> >> >Tina Mom to Alyssa

>> >> >

>> >> >>

>> >>

>> >> >

>> >

>> >>

>>

>> >

>

>>

[Guest guest]

Tina, I'm 15 minutes west of Oklahoma City. I would also be furious w/ this

doc. If the nurse sees the same thing then it's time for the doc to get

fired up. The msg. came across scrambled so if I haven't answered anything

you needed then please let me know. We'll be saying a pray tonight for

Alyssa. Holler if you need anything or just an ear to listen to.... Rhonda,

mom to 2, & Haven 5

Re: [eosinophilic gastroenteritis] Meds

>From: Ssrams@...

>

>In a message dated 12/2/99 8:31:40 AM Central Standard Time,

>jones5@... writes:

>

><< he be put in the hospital & receive i.v. fluids to get her Our home

>health nurse was going to talk to the ped on call for out normal ped. She

was

>talking about keeping her here and doing it. may be the problem is that he

>doesn't want to go aganist the GI dr and he doesn't seem too concerned,

after

>all the drinking yesterday Alyssa started throwing up and she bloated huge

>and was crying well our nurse tried to call the Gi dr he didn't return her

>call I tried and he didn't call me back either so I had to un hook her for

4

>hrs and just wait it out and hoped I wasn't going to have to take her to

the

>ER that ticks me off big time

> > >> rehydrated? I know you are so tired & exhausted mentally &

physically.

> > >I'm

> > >> in Oklahoma. Where are you located at? I live in Sherman Texas I

think

>I asked you before where in OK? I live 10 min for the border of OK. If I

>can help with anything

> that

> > >you

> > >> can think of please call me . From the things that you

> > have

> > >> described, it definitely does not sound right... Even the nurse

thinks

>something else is wrong Can you get another

> > >opinion

> > >> from another GI? Our problem is that we can't find one who will take

>her case we already drive 3 1/2 hrs to the one we have I have gone against

>one doctor's orders, but had my

> ped

> > >> backing me up on it & was following her orders. Alysssa 's ped

doesn't

>get back until Monday so I have to wait to talk to him then Again, I'm

>sorry for

> > what

> > >> you & Alyssa are going through. I'm here to listen if you need

>to...thanks, Tina

> > >> Rhonda, mom to & Haven

> > >>

> > >> -----Original Mes >>

>

>>

[Guest guest]

Please do say it, I am going nuts trying to remember it. I hate when I

can't remember something.

Dawn-KS, mommy to Dakota, 7, aka BJ, 4, (eosinophilic

gastroenteritis, Nissen, asthma, reflux), and mommy to Mackenzie Marie

andrya born 11/20/99

Re: [eosinophilic gastroenteritis] Meds

> >> >>

> >> >>

> >> >> >From: Ssrams@...

> >> >> >

> >> >> >Hi this is again and finally Dr s called and said that he

wants

> >> >> Alyssa

> >> >> >to have only 10oz of water aday and for her to have gatoraid or

> >pedalite

> >> >> the

> >> >> >rest of the time well that was at 2:00 and it is 5:18 she has went

> >> >through

> >> >> >64oz of gatoraid, this can't be normal? even before she she

wouldn't

> >> >drink

> >> >> >this much and now she wants more so should I give it to her? I am

so

> >> >tired

> >> >> >or Drs not calling back and being in such a hurry that you can't

get

> >all

> >> >> the

> >> >> >questions out that you need too. I also would like to take her off

> the

> >> >> >prednisone but I was told by a friend who is a nurse that if you

take

> >a

> >> >> child

> >> >> >off a medication that a DR deemed necessary to live and you with

hold

> >> >that

> >> >> >and something happens the parent is held responsible. So Do we

> >continue

> >> >> and

> >> >> >say ok thhis may help her some but is damaging her insides in the

> long

> >> >run

> >> >> >what is better? I am so tired of all this there are times I wonder

> why

> >> >her

> >> >> >WHY ALYSSA? what not some parent who doesn't care or did drugs

or

> >> >other

> >> >> >terrible things. I know it is self pity. but still. Some parents

at

> >our

> >> >> >church have asked how do you do this don't you get tired of all the

> DR

> >> >> >visits, hospital stays and so on I just want to yell you don't have

a

> >> >> choice

> >> >> >you do what you have to, to us this is the norm, it has become such

a

> >> >> routine

> >> >> >that you forget that is not normal for a child to be sick to sleep

> >most

> >> >of

> >> >> >the time, to cry alot to to look like hell warmed over I guess that

> >has

> >> >to

> >> >> be

> >> >> >the worst One parent said to me " GOSH SHE LOOKS TERRIBLE I CAN'T

> >> BELIEVE

> >> >> >THIS IS THE SAME ALYSSA " I just wanted to scream you know I know

she

> >> >looks

> >> >> >bad but I have to live with this every day couldn't you be nice and

> >just

> >> >> say

> >> >> >nice to see you. well that is enough venting thanks for letting me

> get

> >> >some

> >> >> >steam out. By the way has any one gone against DR wishes? I have

> >been

> >> >> >thinking about stopping all treatment and just going back to square

> >one

> >> >> just

> >> >> >to see how she does? any input?

> >> >> >Tina Mom to Alyssa

> >> >> >

> >> >> >>

> >> >>

> >> >> >

> >> >

> >> >>

> >>

> >> >

> >

> >>

>

> >

[Guest guest]

Dawn, I believe you are talking about Dr. Grunow. Am I right? rhonda

Re: [eosinophilic gastroenteritis] Meds

>

>

>Please do say it, I am going nuts trying to remember it. I hate when I

>can't remember something.

>

>Dawn-KS, mommy to Dakota, 7, aka BJ, 4, (eosinophilic

>gastroenteritis, Nissen, asthma, reflux), and mommy to Mackenzie Marie

>andrya born 11/20/99

> Re: [eosinophilic gastroenteritis] Meds

>> >> >>

>> >> >>

>> >> >> >From: Ssrams@...

>> >> >> >

>> >> >> >Hi this is again and finally Dr s called and said that he

>wants

>> >> >> Alyssa

>> >> >> >to have only 10oz of water aday and for her to have gatoraid or

>> >pedalite

>> >> >> the

>> >> >> >rest of the time well that was at 2:00 and it is 5:18 she has went

>> >> >through

>> >> >> >64oz of gatoraid, this can't be normal? even before she she

>wouldn't

>> >> >drink

>> >> >> >this much and now she wants more so should I give it to her? I am

>so

>> >> >tired

>> >> >> >or Drs not calling back and being in such a hurry that you can't

>get

>> >all

>> >> >> the

>> >> >> >questions out that you need too. I also would like to take her off

>> the

>> >> >> >prednisone but I was told by a friend who is a nurse that if you

>take

>> >a

>> >> >> child

>> >> >> >off a medication that a DR deemed necessary to live and you with

>hold

>> >> >that

>> >> >> >and something happens the parent is held responsible. So Do we

>> >continue

>> >> >> and

>> >> >> >say ok thhis may help her some but is damaging her insides in the

>> long

>> >> >run

>> >> >> >what is better? I am so tired of all this there are times I wonder

>> why

>> >> >her

>> >> >> >WHY ALYSSA? what not some parent who doesn't care or did drugs

>or

>> >> >other

>> >> >> >terrible things. I know it is self pity. but still. Some parents

>at

>> >our

>> >> >> >church have asked how do you do this don't you get tired of all

the

>> DR

>> >> >> >visits, hospital stays and so on I just want to yell you don't

have

>a

>> >> >> choice

>> >> >> >you do what you have to, to us this is the norm, it has become

such

>a

>> >> >> routine

>> >> >> >that you forget that is not normal for a child to be sick to sleep

>> >most

>> >> >of

>> >> >> >the time, to cry alot to to look like hell warmed over I guess

that

>> >has

>> >> >to

>> >> >> be

>> >> >> >the worst One parent said to me " GOSH SHE LOOKS TERRIBLE I CAN'T

>> >> BELIEVE

>> >> >> >THIS IS THE SAME ALYSSA " I just wanted to scream you know I know

>she

>> >> >looks

>> >> >> >bad but I have to live with this every day couldn't you be nice

and

>> >just

>> >> >> say

>> >> >> >nice to see you. well that is enough venting thanks for letting me

>> get

>> >> >some

>> >> >> >steam out. By the way has any one gone against DR wishes? I have

>> >been

>> >> >> >thinking about stopping all treatment and just going back to

square

>> >one

>> >> >> just

>> >> >> >to see how she does? any input?

>> >> >> >Tina Mom to Alyssa

>> >> >> >

>> >> >> >>

>> >> >>

>> >> >> >

>> >> >

>> >> >>

>> >>

>> >> >

>> >

>> >>

>>

>> >

>

>

[Guest guest]

I don't have my son on meds but I can totally relate to your story. My 4yo is very high-functioning, so much so that some (who don't REALY know him) question his autism dx. I am always asking about "anger management" for my son. He is either right on and happy or he's mad-as-a-hornet and throws tantrums (kicking, hitting, screaming mad, throwing and banging his head on objects).

I wondered about bi-polar (my grandfather was) but they said they don't (or won't) dx bipolar until atleast age 9. No one has suggested meds to control my son's behavior (yet). They are very successful at school in calming him down...much better than I am with it. He is put into a time-out bucket (those large plastic ones you can buy anywhere) and this works mainly at school. At home we try it but he's not afraid to defy us so it usually ends up with a firm swat on the butt (and he usually will ask me to spank him). It's like the swat on the butt does something to him that resets his brain and then he's usually apologetic after that.

*NOTE: the swat is not hard because he no longer wears diapers...I don't want anyone worrying that I am hurting my son...

Having said all that, I have been able to prove that Logan's worst tempers relate to his diet. I have tested this theory many times with his teacher. Logan is on a CF, mostly GF, and yeast-free diet but occaisionally he gets something he shouldn't. I can usually tell immediately. For several months when this happened I purposely didn't tell the teacher, trying to prove my theory. His diet infractions usually happen on the weekend and I swear every Monday I wouldget a call at home from her because he was so out of control. Now that the theory has been proven I warn her ahead of time.

Have you thought about your son's diet? If he's on a special diet can you relate his actions/temper back to infractions? It's just a thought. Good luck to you and let us know how things work out.

-----Original Message-----From: Elaine Sent: Friday, July 25, 2003 9:40 AMTo: EverydayMiraclesAutism Subject: medsWondered what people's thoughts were on medications for a 5 year old for mood stabilization. Prozac was mentioned as one. I am very hesitant to put my son on this ... I don't want to rule out the possibility of meds altogether, as they may help my son especially in school. Conner is mildly autistic, very high functioning, level 5+ functional level in the PLAY project. However, he has significant problems with moods swings and controlling his emotions at times. Once he has a "meltdown" then it is very difficult for him to regain control. Everything, small or large, thereafter sets him off. He cries, screams, flails around, and sometimes throws things when he is having one of these tantrums. Schools (PPI) had significant problems with this last year. He was only in the PPI for 7 weeks at the end of teh school, so they were still working on how to best handle his meltdowns, but will be going back in the fall. Anyway, Dr. Solomon suggested mood stabilization drugs as possiblity for him. I am a bit anxious about this and have yet to make a decision. I am currenlty reading up on these meds. If you have a have a child on these meds (or experience with them in the past) your opinion/input would be appreciated. Thx. Elaine Support Everyday Miracles by shopping online at IGIVE.COM, where a portion of every purchase is donated to this support network. Proceeds received will be used for a variety of functions, such as educational activities, therapy, famiy outings, etc. http://www.igive.com/EDM

[Guest guest]

, your anger is justified, but it also saps your energy, which you need for fighting this disease. I don't know how long you have been sick, but some family members & friends never do "get it." However, there is hope. In the Links section, found at the bottom of each message sent to the group, is a website that has been very helpful to many of us. Here is the address:

http://www.invisibledisabilities.com/lookgood.htm

You can order a booklet called "But You Look Good;" I think they are about $5 each. I got several & passed them around to my friends, church members & gave one to my neurologist. Now some people will never understand, or even make an effort. Others will try & sometimes they do seem to get it, but may let you down at times. Kids & spouses get burnt out; sometimes they are scared but don't know how to express it.

I am 57, divorced for 10+ years, with 3 grown children & 7 grandkids. My 83 yr. old mother & 16 yr. old granddaughter live with me. I think my mother really does accept that I'm not well; what she does to irritate me is claim she has every symptom I have, or someone she knows/knew does. "Maybe my cousin had your disease," etc. My kids know I'm sick; they can see the difference in my activity, especially having to give up a career I loved. I print out basic info on NS to give to just about everyone I come into contact with, whether doctors, therapists, teachers, etc. Here is one site with a one-page info sheet:

http://www.ninds.nih.gov/disorders/neurosarcoidosis/neurosarcoidosis.htm-

There are many other excellent resources in the Links, as well as in the archived messages. If you can't get your loved ones (and your doctors) to take your illness seriously, there are many here who will understand your anger & frustration. This is a place where you can feel free to say anything you want, rant, rave, cuss, cry, whatever helps. We truly understand.

We know what it's like to have to research your own illness, educate your own doctors on current diagnostic & treatment options, make sure all of your medical team communicate with each other. Yeah, it's ridiculous for the person who is sick to have to do this, and often you aren't up to it & you want to give up. That's when you write us & somebody has the information you need, or can tell you how to get it. Somebody has an idea that has worked for them. You realize that you are not alone, and you might even find yourself smiling or laughing at something.

Try to find at least one person to be an advocate for you, to go to doctor's appts with you & make sure that the doc doesn't escape until all your questions & concerns have been addressed. This disease has a couple of nicknames--the sarc monster & suckoidosis. But there is power in numbers, and in this group you have hundreds of people all over the world who do understand & care. Ramblin' Rose, moderator

-- In Neurosarcoidosis , "nancy" wrote:>> what kind of meds are people with neuro taking now. I'm on Imuran 50mg > tid, prednisone 60mg qd, neurontin 800m hs,Klonipin 2mg daily bp meds > ambien 10mg hs. but i cant shake this internal anger and anger at > people who dont understand how I feel. Its like if I have to live like > this then why live. I was a nurse for 30 years and would like to know > what else other people are taking. I understand there is a Dr in St > Louis who specializes in sarcoid. I live in AR so not a great distance > for me. Anyone else heard of him. But there is also the issue of my > disability I dont want to screw it up. I would love to hear from > anyone who has this and knows what I'm going thru. My parents are in > their 80's so they dont understand. If you cant see it then its not > there. They just feel I'm a mental case. My grown children's response > is "take your medicine and go to bed." I have no one else but my 4 > dogs who do love me.If there is something else maybe I can talk to my > pcp about it although he really doesnt want to deal with my sarcoid. > thanks, nancy>

[Guest guest]

,

Where are you from? Arkansas? Let me know cause I spent some time

there and graduated High School.

Terri G.

> >

> > what kind of meds are people with neuro taking now. I'm on Imuran

50mg

> > tid, prednisone 60mg qd, neurontin 800m hs,Klonipin 2mg daily bp

meds

> > ambien 10mg hs. but i cant shake this internal anger and anger at

> > people who dont understand how I feel. Its like if I have to live

like

> > this then why live. I was a nurse for 30 years and would like to

know

> > what else other people are taking. I understand there is a Dr in St

> > Louis who specializes in sarcoid. I live in AR so not a great

distance

> > for me. Anyone else heard of him. But there is also the issue of my

> > disability I dont want to screw it up. I would love to hear from

> > anyone who has this and knows what I'm going thru. My parents are in

> > their 80's so they dont understand. If you cant see it then its not

> > there. They just feel I'm a mental case. My grown children's

response

> > is " take your medicine and go to bed. " I have no one else but my 4

> > dogs who do love me.If there is something else maybe I can talk to

my

> > pcp about it although he really doesnt want to deal with my sarcoid.

> > thanks, nancy

> >

>

[Guest guest]

,

Where are you from? Arkansas? Let me know cause I spent some time

there and graduated High School.

Terri G.

> >

> > what kind of meds are people with neuro taking now. I'm on Imuran

50mg

> > tid, prednisone 60mg qd, neurontin 800m hs,Klonipin 2mg daily bp

meds

> > ambien 10mg hs. but i cant shake this internal anger and anger at

> > people who dont understand how I feel. Its like if I have to live

like

> > this then why live. I was a nurse for 30 years and would like to

know

> > what else other people are taking. I understand there is a Dr in St

> > Louis who specializes in sarcoid. I live in AR so not a great

distance

> > for me. Anyone else heard of him. But there is also the issue of my

> > disability I dont want to screw it up. I would love to hear from

> > anyone who has this and knows what I'm going thru. My parents are in

> > their 80's so they dont understand. If you cant see it then its not

> > there. They just feel I'm a mental case. My grown children's

response

> > is " take your medicine and go to bed. " I have no one else but my 4

> > dogs who do love me.If there is something else maybe I can talk to

my

> > pcp about it although he really doesnt want to deal with my sarcoid.

> > thanks, nancy

> >

>

[Guest guest]

,

Where are you from? Arkansas? Let me know cause I spent some time

there and graduated High School.

Terri G.

> >

> > what kind of meds are people with neuro taking now. I'm on Imuran

50mg

> > tid, prednisone 60mg qd, neurontin 800m hs,Klonipin 2mg daily bp

meds

> > ambien 10mg hs. but i cant shake this internal anger and anger at

> > people who dont understand how I feel. Its like if I have to live

like

> > this then why live. I was a nurse for 30 years and would like to

know

> > what else other people are taking. I understand there is a Dr in St

> > Louis who specializes in sarcoid. I live in AR so not a great

distance

> > for me. Anyone else heard of him. But there is also the issue of my

> > disability I dont want to screw it up. I would love to hear from

> > anyone who has this and knows what I'm going thru. My parents are in

> > their 80's so they dont understand. If you cant see it then its not

> > there. They just feel I'm a mental case. My grown children's

response

> > is " take your medicine and go to bed. " I have no one else but my 4

> > dogs who do love me.If there is something else maybe I can talk to

my

> > pcp about it although he really doesnt want to deal with my sarcoid.

> > thanks, nancy

> >

>

[Guest guest]

Hi. Excuse this note if I already responded. You know

what the memory is like. I take 1800 Neurontin, 10

Pred, 260 Quinine, 40 Lasik(only the generic brand),&

I forgot how much but 3 of the bladder pills. I am

also getting 1400 Cyttoxan every 3 weeks along with

extra steroids in the iv & to take for 3 days after

iv. If I already told this sorry & please disregard.

LOL I say that alot.

grannylunatic@...

__________________________________________________

[Guest guest]

Hi. Excuse this note if I already responded. You know

what the memory is like. I take 1800 Neurontin, 10

Pred, 260 Quinine, 40 Lasik(only the generic brand),&

I forgot how much but 3 of the bladder pills. I am

also getting 1400 Cyttoxan every 3 weeks along with

extra steroids in the iv & to take for 3 days after

iv. If I already told this sorry & please disregard.

LOL I say that alot.

grannylunatic@...

__________________________________________________

[Guest guest]

Hi. Excuse this note if I already responded. You know

what the memory is like. I take 1800 Neurontin, 10

Pred, 260 Quinine, 40 Lasik(only the generic brand),&

I forgot how much but 3 of the bladder pills. I am

also getting 1400 Cyttoxan every 3 weeks along with

extra steroids in the iv & to take for 3 days after

iv. If I already told this sorry & please disregard.

LOL I say that alot.

grannylunatic@...

__________________________________________________

[Guest guest]

what kind of meds are people with neuro taking now. I'm on Imuran 50mg

tid, prednisone 60mg qd, neurontin 800m hs,Klonipin 2mg daily bp meds

ambien 10mg hs. but i cant shake this internal anger and anger at

people who dont understand how I feel. Its like if I have to live like

this then why live. I was a nurse for 30 years and would like to know

what else other people are taking. I understand there is a Dr in St

,

The Prednisone, Neurontin, and Klonipin are all adding to your depression. Especially the prednisone.

Anger, Frustration, Rage--all come with prednisone.

Losing your profession, your identity, not having support from family--parents or children-- is especially hard.

Going to bed isn't the answer.

You need anti-depressant to counteract the prednisone. You need a compentent MD that will get you into hands that can help you. With advanced sarc-- it is important to use a combination of medications.

If you could get weaned off the prednisone--that would help. Imuran with Methotrexate is a good combo-- and many times can replace the pred.

Neurontin helps with the neuropathy--so you'll probably need to keep that.

Are you diabetic?

How are your blood sugars? (High dose pred can put you into diabetes--so it's important to keep an eye on this). Also, screwy blood sugars can add to depression and the neuropathy.

I see you're on Ambien--do you take this nightly? How long have you been taking it?

Imuran, Methotrexate, Arava, Remicade, Enbrel, Humira are all alternatives when prednisone is no longer working--or the side effects are such that you need off of it.

There are many antidepressants that can help, and if combined with your regiment--will make a world of difference-- you'll get some rest- and your pain will decrease.

Don't give up--we are here for you and with you.

Tracie

NSCo-owner/moderator