RE: meds

[Guest guest]

WOW!! And I thought I was organized. Well, I know I am not when it comes

to this med thing. That is very helpful. Thank you. Remi is on a timed

voiding schedule and i use a watch that will beep every two hours without

touching it. That is how often she has to go. But the different meds and

when was just throwing this brain in a tizzy. Thanks.

Phyllis-mom to

Arissa (12/22/95) EG, multiple food allergies, occasional asthma

Remi 6, Spina Bifida, developmental delays, allergies-nuts, shellfish and

latex

[Guest guest]

Hi Sue, I'm thinking of switching to Mirapex from Permax and don't quite

know how to do it dosage wise. At present I'm taking 2 tabs of 0.05 Permax

at 9AM, 3PM and 10PM. Anyone got any info that may help? Also Sue, what is

the name of that combination you take at bedtime?

CHEERS!

Jeanne and Mr. Biggles in Poultney, VT

[Guest guest]

Hi Jeanne:

Although I can't help you with the switchover from Permax to Mirapex, I thought

that I might make a comment on that Sue made about the combination that she

takes at bedtime. I have " experimented " with several of the Celestial Seasonings

Teas and Supplements and have found that the " Sleepytime " tea works very well

for me when it's time to relax. It has some of the same ingredients as what Sue

mentioned, as a matter of fact, these are the exact ingredients off of the box:

Chamomile flowers, spearmint leaves, lemon grass, tilia flowers, blackberry

leaves, orange blossoms, hawthorn berries and rosebuds. I usually use two bags

in a large mug and let it steep for about 15 minutes with a little sugar or

honey and then just sip it slowly (I leave the bags in the whole time). It, on

top of my regular RLS meds, works very well for me 6 out of 7 nights a week (you

always seem to have that one bad night, huh?). It also comes in capsules if you

don't want to drink the tea. I have tried the " Tension Tamer " tea, but in my

case, it didn't help me to relax at all because one of the main ingredients in

it is Ginseng, which my body interprets as a " stimulant " . Of course, as we all

know, everybody reacts differently to meds and supplements.

So, I guess you all are wondering why I'm still up so late tonight when I just

got out of the hospital yesterday with pneumonia, huh? Well, with the barrage of

medications that I had to bring home with me, in order to be released early

(after alot of begging and pleading with my doctor), it seems that several of

these meds that I'm taking, bronchodilators, breathing treatments, antibiotics,

medications to prevent nausea from all of the other medications, etc., have got

me " wired for sound " right now. So, I'm on my second mug of tea right now and

I'm attempting to wade through some of the e-mail that piled up while I was in

the hospital for a week.

I am starting to feel a little better, still very short of breath, get winded

very easily and I'm on strict orders to do " nothing " until my follow-up appt.

with my pulmonary doctor on Thursday. But, there's not much physical work in

reading and answering messages, is there...lol I must admit, though, being in

the hospital is no fun, as we all know, but it was such a relief when I told my

pulmonary doctor about my RLS and she was very familiar with it. She had no

problem giving the orders for me to have my meds each night and the nurses at

the hospital even fixed my " Sleepytime Tea " for me, so it was a much more

pleasant experience being there than it could have been. The only problem I'm

really having now is my intolerance to oral, and very strong, antibiotics. That

was one of the reasons that I wound up in the hospital in the first place, I

couldn't take any of the strong antibiotics by mouth because I couldn't keep

them down long enough for them to get into my system. After trying the fourth

different one, my doctor finally told me that we had no choice but to admit me,

as I was getting worse and worse, and get me hooked up by IV so that they could

administer steroids and antibiotics that way. Once they started giving me the

pill form antibiotics again, the nausea came right back, so I'm having to take

Phenergan to fight the nausea. Well, one of the side effects of Phenergan, for

me, is RLS, as it is an antihistamine, and as alot of us know, certain

antihistamines tend to aggravate RLS. So, I'm still not sleeping as well as I

should, but hopefully will begin to 3-4 days from now when I'm through with

these antibiotics.

Well, I apologize for the length of this message, as you can see, I'm still

suffering from the side effects of the last breathing treatment(wide awake, or

maybe it's from the 3 little " naps " I took today, I get so tired so fast), so I

guess I'll catch up on a little more mail. The medication in the breathing

treatment tends to make my eyesight a little blurry, so if there are any typos

in this message, I apologize.

I've missed you folks and I'm glad to be back. I'll be home again all next week,

doctor won't release me to go back to work yet, as I still have a lot of

recovering to do. I'm extremely weak, dizzy (LOL) and just not quite up to par

yet, but I'm behaving and taking my meds and will get myself better and back to

the old Jodi. I guess I'll hop over to the Netscape/Excite Online Games site and

see what kind of trouble I can stir up in the Spades lounge tonight, haven't

played in over a week.

I hope that everybody's having a restful night tonight and, I must say, it's

great to be back, and once again, thanks for all of the cards, letters and

e-mails that you wonderful people sent out to me when my roommate posted that

message about me being hospitalized. I didn't even know that she knew how to use

Netscape. She uses my old computer and AOL, so she kind of surprised me. But,

she also knows how much all of you people mean to me, so I guess she felt like

you should know. Anyway, I'm beginning to feel better and hopefully, before

long, I can put all of this behind me and feel halfway decent again. I really

actually am looking forward to going back to work, but that's at least a week or

more away, so I should be able to get caught up on all of this mail.

Restful Nights,

Jodi

Jeanne Robbins wrote:

>

>

> Hi Sue, I'm thinking of switching to Mirapex from Permax and don't quite

> know how to do it dosage wise. At present I'm taking 2 tabs of 0.05 Permax

> at 9AM, 3PM and 10PM. Anyone got any info that may help? Also Sue, what is

> the name of that combination you take at bedtime?

>

> CHEERS!

>

> Jeanne and Mr. Biggles in Poultney, VT

>

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

>

[Guest guest]

Hi Jeanne:

Although I can't help you with the switchover from Permax to Mirapex, I thought

that I might make a comment on that Sue made about the combination that she

takes at bedtime. I have " experimented " with several of the Celestial Seasonings

Teas and Supplements and have found that the " Sleepytime " tea works very well

for me when it's time to relax. It has some of the same ingredients as what Sue

mentioned, as a matter of fact, these are the exact ingredients off of the box:

Chamomile flowers, spearmint leaves, lemon grass, tilia flowers, blackberry

leaves, orange blossoms, hawthorn berries and rosebuds. I usually use two bags

in a large mug and let it steep for about 15 minutes with a little sugar or

honey and then just sip it slowly (I leave the bags in the whole time). It, on

top of my regular RLS meds, works very well for me 6 out of 7 nights a week (you

always seem to have that one bad night, huh?). It also comes in capsules if you

don't want to drink the tea. I have tried the " Tension Tamer " tea, but in my

case, it didn't help me to relax at all because one of the main ingredients in

it is Ginseng, which my body interprets as a " stimulant " . Of course, as we all

know, everybody reacts differently to meds and supplements.

So, I guess you all are wondering why I'm still up so late tonight when I just

got out of the hospital yesterday with pneumonia, huh? Well, with the barrage of

medications that I had to bring home with me, in order to be released early

(after alot of begging and pleading with my doctor), it seems that several of

these meds that I'm taking, bronchodilators, breathing treatments, antibiotics,

medications to prevent nausea from all of the other medications, etc., have got

me " wired for sound " right now. So, I'm on my second mug of tea right now and

I'm attempting to wade through some of the e-mail that piled up while I was in

the hospital for a week.

I am starting to feel a little better, still very short of breath, get winded

very easily and I'm on strict orders to do " nothing " until my follow-up appt.

with my pulmonary doctor on Thursday. But, there's not much physical work in

reading and answering messages, is there...lol I must admit, though, being in

the hospital is no fun, as we all know, but it was such a relief when I told my

pulmonary doctor about my RLS and she was very familiar with it. She had no

problem giving the orders for me to have my meds each night and the nurses at

the hospital even fixed my " Sleepytime Tea " for me, so it was a much more

pleasant experience being there than it could have been. The only problem I'm

really having now is my intolerance to oral, and very strong, antibiotics. That

was one of the reasons that I wound up in the hospital in the first place, I

couldn't take any of the strong antibiotics by mouth because I couldn't keep

them down long enough for them to get into my system. After trying the fourth

different one, my doctor finally told me that we had no choice but to admit me,

as I was getting worse and worse, and get me hooked up by IV so that they could

administer steroids and antibiotics that way. Once they started giving me the

pill form antibiotics again, the nausea came right back, so I'm having to take

Phenergan to fight the nausea. Well, one of the side effects of Phenergan, for

me, is RLS, as it is an antihistamine, and as alot of us know, certain

antihistamines tend to aggravate RLS. So, I'm still not sleeping as well as I

should, but hopefully will begin to 3-4 days from now when I'm through with

these antibiotics.

Well, I apologize for the length of this message, as you can see, I'm still

suffering from the side effects of the last breathing treatment(wide awake, or

maybe it's from the 3 little " naps " I took today, I get so tired so fast), so I

guess I'll catch up on a little more mail. The medication in the breathing

treatment tends to make my eyesight a little blurry, so if there are any typos

in this message, I apologize.

I've missed you folks and I'm glad to be back. I'll be home again all next week,

doctor won't release me to go back to work yet, as I still have a lot of

recovering to do. I'm extremely weak, dizzy (LOL) and just not quite up to par

yet, but I'm behaving and taking my meds and will get myself better and back to

the old Jodi. I guess I'll hop over to the Netscape/Excite Online Games site and

see what kind of trouble I can stir up in the Spades lounge tonight, haven't

played in over a week.

I hope that everybody's having a restful night tonight and, I must say, it's

great to be back, and once again, thanks for all of the cards, letters and

e-mails that you wonderful people sent out to me when my roommate posted that

message about me being hospitalized. I didn't even know that she knew how to use

Netscape. She uses my old computer and AOL, so she kind of surprised me. But,

she also knows how much all of you people mean to me, so I guess she felt like

you should know. Anyway, I'm beginning to feel better and hopefully, before

long, I can put all of this behind me and feel halfway decent again. I really

actually am looking forward to going back to work, but that's at least a week or

more away, so I should be able to get caught up on all of this mail.

Restful Nights,

Jodi

Jeanne Robbins wrote:

>

>

> Hi Sue, I'm thinking of switching to Mirapex from Permax and don't quite

> know how to do it dosage wise. At present I'm taking 2 tabs of 0.05 Permax

> at 9AM, 3PM and 10PM. Anyone got any info that may help? Also Sue, what is

> the name of that combination you take at bedtime?

>

> CHEERS!

>

> Jeanne and Mr. Biggles in Poultney, VT

>

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

>

[Guest guest]

Dear Jodi:

I was hospitalized with pneumonia this month also. The medicine in the

breathing therapy machine was AWFUL. It made my heart race and dance around

in my chest, gave me the jitters and seemed to activate the RLS.

My doctor also knows about my RLS and let me have my mirapex and xanax while

hospitalized.

Did you have that same jitteriness with the breathing therapy?????

As my doctor said to me, " Tina, pneumonia is a bitch! " I was in the

hospital on January 5th, got out 4 days later, and still am so very tired

even now. I clean one bird cage, take a nap. Fix lunch, take a nap,

Luckily the RLS hasn't been acting up until right now.....I checked the

weather forcast - it's gonna rain! How'd I know that...

Hope you get better, listen to your doctor, and rest - rest - rest!

Tina

[Guest guest]

I am curious about your reactions to Mirapex and if you have changed to

Requip. I experienced significant insomnia problems when taking the

Mirapex at night and therefore stopped. Now I would like to consider meds

again and wonder if many people in the group, who experienced insomnia as a

side effect of Mirapex, have had better success with Requip. Thanks.

, 50 (Houston)

----------

> From: Bckrich@...

> To: Miklinkat@...

> Cc: rlssupport (AT) onelist (DOT) com

> Subject: Meds

> Date: Wednesday, March 17, 1999 5:36 PM

>

> From: Bckrich@...

>

> I couldn't tolerate Mirapex either. I'm trying Requip next. My

neurologist

> says it works almost as good as Mirapex but has fewer sideaffects.

> Bill,51,Illinois

>

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

> Start a new hobby. Meet a new friend.

> http://www.onelist.com

> Onelist: The leading provider of free email list services

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

> This forum is for support only. The information posted to this List is

for support purposes

> and is not intended to replace the examination, diagnosis and treatment

of a licensed

> physician and no such claims are inferred.

[Guest guest]

I have also experienced insomnia from Mirapex, and will probably try

something different when I have an appointment with this Dr. Walter(or

Walters - don't know which it is) who is a rls specialist. Recently the

insomnia hasn't been as bad, so I'm not really sure what is cause and

effect(what else is new?).

ne, Lawrenceville, NJ

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[Guest guest]

I tried Mirapex for 5 wks. before I dropped it due to mental confusion(big

time!) and insomnia(wide awake at 4am every day). Tried Permax for 10 days but

had a hard time breathing due to congestion. Stopped it after it knocked me

out while driving in the middle of the day! Awoke just in time to avoid

accident. Had hardly any warning.

Started Requip 3 days ago. So far no side affects. Obviously I'm desparate to

find something that works. Obviously most people do a whole lot better on

these drugs than I. I'd try the Mirapex but start out with very low doses!

Bill,51,Illinois

[Guest guest]

I tried Mirapex for 5 wks. before I dropped it due to mental confusion(big

time!) and insomnia(wide awake at 4am every day). Tried Permax for 10 days but

had a hard time breathing due to congestion. Stopped it after it knocked me

out while driving in the middle of the day! Awoke just in time to avoid

accident. Had hardly any warning.

Started Requip 3 days ago. So far no side affects. Obviously I'm desparate to

find something that works. Obviously most people do a whole lot better on

these drugs than I. I'd try the Mirapex but start out with very low doses!

Bill,51,Illinois

[Guest guest]

Hang in there Kelsey -- It took 35 years to get me diagnosed so you are

wayy ahead of the game. Once you get your disease under control, you

will feel better and the shrink -- well, duh, if you can't eat then i

guess everyone on this list has an 'eating disorder' LOL

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

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

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

SJHarlow@...

http://www.c4isr.com/harlow

[Guest guest]

I've used a 1 mg. oxycontin pain pills from time-to-time along with my

..75 mg. mirapex which I take every night.The beneficial effect is dramatic.

But like Ninette,I hesitate using the stuff too much because I'm worried I

may come to depend on it.

Mike,54

York

>From: ninettecampbell@... (Ninette )

>To: rlssupport (AT) onelist (DOT) com

>Subject: Meds

>Date: Sat, 1 May 1999 08:30:23 -0400 (EDT)

>

>From: ninettecampbell@... (Ninette )

>

> I have heard many of you speak of using

>pain meds for RLS, but had never really thought much about it. I have

>always had a difficult time taking pain meds, so that was another reason

>not to consider it. Lately I have had such severe pain in my knees &

>hips that I was trying different things to try and get relief and took a

>hydrocodone. I slept the best I have in ages,

>even though I have cut the Requip down to

>2 doses a day. I was also amazed that I have not been sick from this. I

>am also concerned that the thing that is now helping me is something

>that I need to be very careful about.

>How much is safe ? How long ? I know that again this is different for

>everyone. I also worry about sounding like a " druggie " going to my

>doctor and asking for strong pain meds. The

>Naprosyn that was prescribed for my pain does not even phase it & it is

>a pretty hefty dose.

>Thanks to everyone in advance for your input on this.

>

> Ninette

>

>

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

>Did you know that ONElist hosts some of the largest lists on the Internet?

>http://www.ONElist.com

>Our scaleable system is the most reliable free e-mail service on the

>Internet!

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

>This forum is for support only. The information posted to this List is for

>support purposes

>and is not intended to replace the examination, diagnosis and treatment of

>a licensed

>physician and no such claims are inferred.

_______________________________________________________________

Get Free Email and Do More On The Web. Visit http://www.msn.com

[Guest guest]

I've used a 1 mg. oxycontin pain pills from time-to-time along with my

..75 mg. mirapex which I take every night.The beneficial effect is dramatic.

But like Ninette,I hesitate using the stuff too much because I'm worried I

may come to depend on it.

Mike,54

York

>From: ninettecampbell@... (Ninette )

>To: rlssupport (AT) onelist (DOT) com

>Subject: Meds

>Date: Sat, 1 May 1999 08:30:23 -0400 (EDT)

>

>From: ninettecampbell@... (Ninette )

>

> I have heard many of you speak of using

>pain meds for RLS, but had never really thought much about it. I have

>always had a difficult time taking pain meds, so that was another reason

>not to consider it. Lately I have had such severe pain in my knees &

>hips that I was trying different things to try and get relief and took a

>hydrocodone. I slept the best I have in ages,

>even though I have cut the Requip down to

>2 doses a day. I was also amazed that I have not been sick from this. I

>am also concerned that the thing that is now helping me is something

>that I need to be very careful about.

>How much is safe ? How long ? I know that again this is different for

>everyone. I also worry about sounding like a " druggie " going to my

>doctor and asking for strong pain meds. The

>Naprosyn that was prescribed for my pain does not even phase it & it is

>a pretty hefty dose.

>Thanks to everyone in advance for your input on this.

>

> Ninette

>

>

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

>Did you know that ONElist hosts some of the largest lists on the Internet?

>http://www.ONElist.com

>Our scaleable system is the most reliable free e-mail service on the

>Internet!

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

>This forum is for support only. The information posted to this List is for

>support purposes

>and is not intended to replace the examination, diagnosis and treatment of

>a licensed

>physician and no such claims are inferred.

_______________________________________________________________

Get Free Email and Do More On The Web. Visit http://www.msn.com

[Guest guest]

I've used a 1 mg. oxycontin pain pills from time-to-time along with my

..75 mg. mirapex which I take every night.The beneficial effect is dramatic.

But like Ninette,I hesitate using the stuff too much because I'm worried I

may come to depend on it.

Mike,54

York

>From: ninettecampbell@... (Ninette )

>To: rlssupport (AT) onelist (DOT) com

>Subject: Meds

>Date: Sat, 1 May 1999 08:30:23 -0400 (EDT)

>

>From: ninettecampbell@... (Ninette )

>

> I have heard many of you speak of using

>pain meds for RLS, but had never really thought much about it. I have

>always had a difficult time taking pain meds, so that was another reason

>not to consider it. Lately I have had such severe pain in my knees &

>hips that I was trying different things to try and get relief and took a

>hydrocodone. I slept the best I have in ages,

>even though I have cut the Requip down to

>2 doses a day. I was also amazed that I have not been sick from this. I

>am also concerned that the thing that is now helping me is something

>that I need to be very careful about.

>How much is safe ? How long ? I know that again this is different for

>everyone. I also worry about sounding like a " druggie " going to my

>doctor and asking for strong pain meds. The

>Naprosyn that was prescribed for my pain does not even phase it & it is

>a pretty hefty dose.

>Thanks to everyone in advance for your input on this.

>

> Ninette

>

>

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

>Did you know that ONElist hosts some of the largest lists on the Internet?

>http://www.ONElist.com

>Our scaleable system is the most reliable free e-mail service on the

>Internet!

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

>This forum is for support only. The information posted to this List is for

>support purposes

>and is not intended to replace the examination, diagnosis and treatment of

>a licensed

>physician and no such claims are inferred.

_______________________________________________________________

Get Free Email and Do More On The Web. Visit http://www.msn.com

[Guest guest]

In a message dated 5/7/99 9:10:55 PM !!!First Boot!!!,

susanjohnsonnb@... writes:

<< He was very stern in telling me that Restless Leg Syndrome does not exist

and that as far as he is concerned it is only a Cosmepolitan Name, and says

it is all in my head.... How do ever go about educating people, especially

Doctors, >>

You don't! You find another doctor!!!!

RAINBOWPED@...

[Guest guest]

In a message dated 5/7/99 5:48:54 PM Eastern Daylight Time,

RAINBOWPED@... writes:

<< You don't! You find another doctor!!!! >>

THIS IS TRUE.........REALLY ~!!! IT'S THE BEST THING TO DO!

[Guest guest]

I hope you're going to " kiss-off " that doctor. He sounds hopeless.

Probably one of the old breed who feel they are God. I certainly wouldn't

waste my time on anyone like him.

Cheers!!

Jeanne and Mr. Biggles in Poultney VT

[Guest guest]

I hope you're going to " kiss-off " that doctor. He sounds hopeless.

Probably one of the old breed who feel they are God. I certainly wouldn't

waste my time on anyone like him.

Cheers!!

Jeanne and Mr. Biggles in Poultney VT

[Guest guest]

In a message dated 99-05-07 17:55:30 EDT, you write:

<< From: MetaMom123@...

In a message dated 5/7/99 5:48:54 PM Eastern Daylight Time,

RAINBOWPED@... writes:

<< You don't! You find another doctor!!!! >>

THIS IS TRUE.........REALLY ~!!! IT'S THE BEST THING TO DO!

>>

Good advice. And dont pay his bill.

Marilee

[Guest guest]

In a message dated 99-05-07 17:55:30 EDT, you write:

<< From: MetaMom123@...

In a message dated 5/7/99 5:48:54 PM Eastern Daylight Time,

RAINBOWPED@... writes:

<< You don't! You find another doctor!!!! >>

THIS IS TRUE.........REALLY ~!!! IT'S THE BEST THING TO DO!

>>

Good advice. And dont pay his bill.

Marilee

[Guest guest]

In a message dated 99-05-07 17:55:30 EDT, you write:

<< From: MetaMom123@...

In a message dated 5/7/99 5:48:54 PM Eastern Daylight Time,

RAINBOWPED@... writes:

<< You don't! You find another doctor!!!! >>

THIS IS TRUE.........REALLY ~!!! IT'S THE BEST THING TO DO!

>>

Good advice. And dont pay his bill.

Marilee

[Guest guest]

In a message dated 5/7/99 9:10:55 PM !!!First Boot!!!,

susanjohnsonnb@... writes:

<< He was very stern in telling me that Restless Leg Syndrome does not

exist and that as far as he is concerned it is only a Cosmepolitan Name,

and says it is all in my head.... How do ever go about educating people,

especially Doctors, >>

You don't! You find another doctor!!!!

RAINBOWPED@...

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

I TOTALLY AGREE WITH YOU ANDREW!!!

I wouldn't have confidence in any doctor who offers such

advice....especially when we know RLS is for real. If this doctor

suffered with RLS for one week, I'm sure he'd think differently. He's

very closed minded!!!

Meg

[Guest guest]

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]

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]

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

>

> >