Guest guest Posted March 22, 1999 Report Share Posted March 22, 1999 Any ideas on how you will handle this will your 11 year old. Sounds alot like Dan. Never complains of anything. Has your doctor made any recommedations on how to handle this? Can a IGE blood count be done after each food that is introduced? I'm kind of searching here. If the flovent does not work successfully with Dan I know this will be our next step. Dan's mom EE 17 years old SJHarlow@... wrote: > From: SJHarlow@... > > Phyllis, > > THese are all THE big questions and if any of you have any input into > the food trials PLEASE EMail me. > > We are (supposedly) starting soon one food at a time and will rely > purely on subjective complaint (chest pain, abdominal pain, hiccups, > their normal complaints). I'm not sure this will work with my 11/yo. > He never complained, just started choking one day when he had scarred > up. He drinks the boxes, though, so I am in no hurry to do anything > with him. > > I will be very interested in 's (another EE kid on a restricted > diet on this list) biopsy reports since he successfully did this. > > -- Idiopathic Eosinophilic esophagitis; Mom to 15, IEE, > NIssen/GT; Ken,11, IEE; Korey,7, IEE (NG); Kody, 4, IEE/CIPO. G/JTs;TPN; > Killian,2, IEE (NG); SJHarlow@... > http://www.c4isr.com/harlow > > ------------------------------------------------------------------------ > We are proud as punch of our new web site! > http://www.onelist.com > Onelist: The leading provider of free email community services Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 11, 2000 Report Share Posted January 11, 2000 Kenny had some really good suggestions and something's to add to the Steroid list. Re:Steroids > Hi , > > >7. ...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. > > Good list of major steroid side effects. > > You might want to emphasize topic number seven... > > As you mentioned, after long term usage of steroids, the body usually shuts > down the pituitary gland, which is responsible for generating the bodies own > hormone which is very similar to steroids (thats why steroids are so > effective). During trauma the body needs large amounts of this hormone (I > forgot the name) to help fight the trauma... but since the pituitary is shut > down, the body cannot naturally cope with the trauma, and additional > (man-made) steroids are required. > > In case of emergency, if you are separated from your child and cannot inform > the doctors of the situation, (or worse yet, you are also > incapacitated/unconscious), it is imperative that the doctors know about the > steroid dependency. There are no obvious signs of steroid dependency - thus > the doctors will never know of the problem unless they are specifically > informed. Without additional steroids, a typically non-life threatening > trauma can quickly turn into a life threatening situation (yes death). And > the doctors will never know the cause of death. Though if the doctors knew > of the problem, they could easily account for it, and all trouble is > averted. > > When I went on long term use of steroids, the first thing my doctor > suggested was getting a medial alert bracelet. I think it was a prudent > suggestion. > > Best regards, > > Kenny > > P.S. you might also add acne and hyperactivity to the steroid list > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 14, 2000 Report Share Posted January 14, 2000 We have decided to put Dan on a very short course of steroids. What has been the experience of the group with dosing and duration. He is 6'4 " and weighs approx 190. I would like the least amt for the shortest amt of time. His Ped GI has mentioned 30mg twice daily and wean down from there. What do you guys think? Thanks for the help Dan's MOM Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 14, 2000 Report Share Posted January 14, 2000 Hi Steph Thanks for the info. We tried it twice with very little success to the upper esophagus. None to the lower. Steph wrote: > > > , > > I think that is a very, very mild dose. I was up to 80mg at one point. With > our first trial I started at 60mg for a week, then very very slowly tapered > down. > > With our oldest, who is 16 and weighs only 120 lbs, his dose was the same. > We treat for two months with a flare of symptoms. > > Was there some reason you didnt try Flovent? Or is my memory failing? > > Steph. > > [eosinophilic gastroenteritis] Steroids > > > > > > >We have decided to put Dan on a very short course of steroids. What has > >been the experience of the group with dosing and duration. He is 6'4 " > >and weighs approx 190. > >I would like the least amt for the shortest amt of time. His Ped GI has > >mentioned 30mg twice daily and wean down from there. What do you guys > >think? > >Thanks for the help > > Dan's MOM > > > > > >--------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 14, 2000 Report Share Posted January 14, 2000 Hi Steph Thanks for the info. We tried it twice with very little success to the upper esophagus. None to the lower. Steph wrote: > > > , > > I think that is a very, very mild dose. I was up to 80mg at one point. With > our first trial I started at 60mg for a week, then very very slowly tapered > down. > > With our oldest, who is 16 and weighs only 120 lbs, his dose was the same. > We treat for two months with a flare of symptoms. > > Was there some reason you didnt try Flovent? Or is my memory failing? > > Steph. > > [eosinophilic gastroenteritis] Steroids > > > > > > >We have decided to put Dan on a very short course of steroids. What has > >been the experience of the group with dosing and duration. He is 6'4 " > >and weighs approx 190. > >I would like the least amt for the shortest amt of time. His Ped GI has > >mentioned 30mg twice daily and wean down from there. What do you guys > >think? > >Thanks for the help > > Dan's MOM > > > > > >--------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 14, 2000 Report Share Posted January 14, 2000 Hi Steph Thanks for the info. We tried it twice with very little success to the upper esophagus. None to the lower. Steph wrote: > > > , > > I think that is a very, very mild dose. I was up to 80mg at one point. With > our first trial I started at 60mg for a week, then very very slowly tapered > down. > > With our oldest, who is 16 and weighs only 120 lbs, his dose was the same. > We treat for two months with a flare of symptoms. > > Was there some reason you didnt try Flovent? Or is my memory failing? > > Steph. > > [eosinophilic gastroenteritis] Steroids > > > > > > >We have decided to put Dan on a very short course of steroids. What has > >been the experience of the group with dosing and duration. He is 6'4 " > >and weighs approx 190. > >I would like the least amt for the shortest amt of time. His Ped GI has > >mentioned 30mg twice daily and wean down from there. What do you guys > >think? > >Thanks for the help > > Dan's MOM > > > > > >--------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 14, 2000 Report Share Posted January 14, 2000 , I think that is a very, very mild dose. I was up to 80mg at one point. With our first trial I started at 60mg for a week, then very very slowly tapered down. With our oldest, who is 16 and weighs only 120 lbs, his dose was the same. We treat for two months with a flare of symptoms. Was there some reason you didnt try Flovent? Or is my memory failing? Steph. [eosinophilic gastroenteritis] Steroids > > >We have decided to put Dan on a very short course of steroids. What has >been the experience of the group with dosing and duration. He is 6'4 " >and weighs approx 190. >I would like the least amt for the shortest amt of time. His Ped GI has >mentioned 30mg twice daily and wean down from there. What do you guys >think? >Thanks for the help > Dan's MOM > > >--------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 14, 2000 Report Share Posted January 14, 2000 , I think that is a very, very mild dose. I was up to 80mg at one point. With our first trial I started at 60mg for a week, then very very slowly tapered down. With our oldest, who is 16 and weighs only 120 lbs, his dose was the same. We treat for two months with a flare of symptoms. Was there some reason you didnt try Flovent? Or is my memory failing? Steph. [eosinophilic gastroenteritis] Steroids > > >We have decided to put Dan on a very short course of steroids. What has >been the experience of the group with dosing and duration. He is 6'4 " >and weighs approx 190. >I would like the least amt for the shortest amt of time. His Ped GI has >mentioned 30mg twice daily and wean down from there. What do you guys >think? >Thanks for the help > Dan's MOM > > >--------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 14, 2000 Report Share Posted January 14, 2000 , I think that is a very, very mild dose. I was up to 80mg at one point. With our first trial I started at 60mg for a week, then very very slowly tapered down. With our oldest, who is 16 and weighs only 120 lbs, his dose was the same. We treat for two months with a flare of symptoms. Was there some reason you didnt try Flovent? Or is my memory failing? Steph. [eosinophilic gastroenteritis] Steroids > > >We have decided to put Dan on a very short course of steroids. What has >been the experience of the group with dosing and duration. He is 6'4 " >and weighs approx 190. >I would like the least amt for the shortest amt of time. His Ped GI has >mentioned 30mg twice daily and wean down from there. What do you guys >think? >Thanks for the help > Dan's MOM > > >--------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 3, 2009 Report Share Posted January 3, 2009 Unfortunately it seems that the symptoms are right on the money. Two years ago I had to be on a course of oral prednisone. I think I was on 40 mg (which I believe is weight dependent). I remember taking an anti anxiety as a sleep aid before sleep as I was extremely jittery. I had an uncontrolable apetite. I developes some cold sores and a bunch of other symptoms. But when you need it it does the trick. ShaulPsc UC Sent via BlackBerry by AT&TFrom: lilstef23@...Date: Sun, 4 Jan 2009 00:50:50 ESTTo: < >; <pscmoms >Subject: steroids My daughter has been on 30 mg of prednisone since 12/31. Is that a lot? Her appetite is out of control and shes spelling words backwards. I know weight gain is side effect ( we are already seeing it in her face) She gets upset easily too...Is this what I am to expect for this duration?New year...new news. Be the first to know what is making headlines. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 3, 2009 Report Share Posted January 3, 2009 Unfortunately it seems that the symptoms are right on the money. Two years ago I had to be on a course of oral prednisone. I think I was on 40 mg (which I believe is weight dependent). I remember taking an anti anxiety as a sleep aid before sleep as I was extremely jittery. I had an uncontrolable apetite. I developes some cold sores and a bunch of other symptoms. But when you need it it does the trick. ShaulPsc UC Sent via BlackBerry by AT&TFrom: lilstef23@...Date: Sun, 4 Jan 2009 00:50:50 ESTTo: < >; <pscmoms >Subject: steroids My daughter has been on 30 mg of prednisone since 12/31. Is that a lot? Her appetite is out of control and shes spelling words backwards. I know weight gain is side effect ( we are already seeing it in her face) She gets upset easily too...Is this what I am to expect for this duration?New year...new news. Be the first to know what is making headlines. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 3, 2009 Report Share Posted January 3, 2009 Unfortunately it seems that the symptoms are right on the money. Two years ago I had to be on a course of oral prednisone. I think I was on 40 mg (which I believe is weight dependent). I remember taking an anti anxiety as a sleep aid before sleep as I was extremely jittery. I had an uncontrolable apetite. I developes some cold sores and a bunch of other symptoms. But when you need it it does the trick. ShaulPsc UC Sent via BlackBerry by AT&TFrom: lilstef23@...Date: Sun, 4 Jan 2009 00:50:50 ESTTo: < >; <pscmoms >Subject: steroids My daughter has been on 30 mg of prednisone since 12/31. Is that a lot? Her appetite is out of control and shes spelling words backwards. I know weight gain is side effect ( we are already seeing it in her face) She gets upset easily too...Is this what I am to expect for this duration?New year...new news. Be the first to know what is making headlines. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 4, 2009 Report Share Posted January 4, 2009 I have taken much larger doses of prednisone before (age 40. It is a wonderful drug as far as helping you get through what ever is going on that they are prescribing it for, but for some people the side effects are significant. When I take it, I warn everyone that I am on it because I become really mean. I eat everything and quite frankly hate everybody. When my boss, who has RA and Lupus takes it, it makes her very happy. Since I am aware of what it does to me I can keep myself in check some what, but we always use it as a last course drug for me because it makes me so mean. Good Luck Dawn > > My daughter has been on 30 mg of prednisone since 12/31. Is that a lot? > Her appetite is out of control and shes spelling words backwards. I know > weight gain is side effect ( we are already seeing it in her face) She gets upset > easily too...Is this what I am to expect for this duration? > **************New year...new news. Be the first to know what is making > headlines. (http://www.aol.com/?ncid=emlcntaolcom00000026) > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 4, 2009 Report Share Posted January 4, 2009 I have taken much larger doses of prednisone before (age 40. It is a wonderful drug as far as helping you get through what ever is going on that they are prescribing it for, but for some people the side effects are significant. When I take it, I warn everyone that I am on it because I become really mean. I eat everything and quite frankly hate everybody. When my boss, who has RA and Lupus takes it, it makes her very happy. Since I am aware of what it does to me I can keep myself in check some what, but we always use it as a last course drug for me because it makes me so mean. Good Luck Dawn > > My daughter has been on 30 mg of prednisone since 12/31. Is that a lot? > Her appetite is out of control and shes spelling words backwards. I know > weight gain is side effect ( we are already seeing it in her face) She gets upset > easily too...Is this what I am to expect for this duration? > **************New year...new news. Be the first to know what is making > headlines. (http://www.aol.com/?ncid=emlcntaolcom00000026) > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 4, 2009 Report Share Posted January 4, 2009 Is the 30 mg of prednisone a day a lot?New year...new news. Be the first to know what is making headlines. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 4, 2009 Report Share Posted January 4, 2009 Is the 30 mg of prednisone a day a lot?New year...new news. Be the first to know what is making headlines. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 4, 2009 Report Share Posted January 4, 2009 Is the 30 mg of prednisone a day a lot?New year...new news. Be the first to know what is making headlines. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 4, 2009 Report Share Posted January 4, 2009 She weighs 40lbs.New year...new news. Be the first to know what is making headlines. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 4, 2009 Report Share Posted January 4, 2009 She weighs 40lbs.New year...new news. Be the first to know what is making headlines. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 4, 2009 Report Share Posted January 4, 2009 She weighs 40lbs.New year...new news. Be the first to know what is making headlines. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 4, 2009 Report Share Posted January 4, 2009 ----Original Message----- My daughter has been on 30 mg of prednisone since 12/31. Her appetite is out of control and shes spelling words backwards. I know weight gain is side effect ( we are already seeing it in her face) She gets upset easily too...Is this what I am to expect for this duration? Per our experience – yup, it’s here for the duration. Ken is currently on 10mg (he started at 60mg during last rejection). He’s gained about 30 pounds and yes can be cranky as all get out. Ken has a lot of trouble with spelling, understanding, and maintaining attention, but we’re never sure if this is due to steroids or his ammonia level, which stays high. I’m sure I’ll hear about this post as soon as he reads it! Nothing you can do about it, except wait it out. The “moon face” is due to fluid build up caused by the steroids, it will go down as she comes off the steroids. HTH Barb in Texas - Together in the Fight - Whatever it Takes! Son Ken (34) UC 91 PSC 99, LTX 6/21 & 6/30 2007 @ Baylor/Dallas Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 4, 2009 Report Share Posted January 4, 2009 ----Original Message----- My daughter has been on 30 mg of prednisone since 12/31. Her appetite is out of control and shes spelling words backwards. I know weight gain is side effect ( we are already seeing it in her face) She gets upset easily too...Is this what I am to expect for this duration? Per our experience – yup, it’s here for the duration. Ken is currently on 10mg (he started at 60mg during last rejection). He’s gained about 30 pounds and yes can be cranky as all get out. Ken has a lot of trouble with spelling, understanding, and maintaining attention, but we’re never sure if this is due to steroids or his ammonia level, which stays high. I’m sure I’ll hear about this post as soon as he reads it! Nothing you can do about it, except wait it out. The “moon face” is due to fluid build up caused by the steroids, it will go down as she comes off the steroids. HTH Barb in Texas - Together in the Fight - Whatever it Takes! Son Ken (34) UC 91 PSC 99, LTX 6/21 & 6/30 2007 @ Baylor/Dallas Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 4, 2009 Report Share Posted January 4, 2009 ----Original Message----- My daughter has been on 30 mg of prednisone since 12/31. Her appetite is out of control and shes spelling words backwards. I know weight gain is side effect ( we are already seeing it in her face) She gets upset easily too...Is this what I am to expect for this duration? Per our experience – yup, it’s here for the duration. Ken is currently on 10mg (he started at 60mg during last rejection). He’s gained about 30 pounds and yes can be cranky as all get out. Ken has a lot of trouble with spelling, understanding, and maintaining attention, but we’re never sure if this is due to steroids or his ammonia level, which stays high. I’m sure I’ll hear about this post as soon as he reads it! Nothing you can do about it, except wait it out. The “moon face” is due to fluid build up caused by the steroids, it will go down as she comes off the steroids. HTH Barb in Texas - Together in the Fight - Whatever it Takes! Son Ken (34) UC 91 PSC 99, LTX 6/21 & 6/30 2007 @ Baylor/Dallas Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 4, 2009 Report Share Posted January 4, 2009 It depends on the patient’s weight. What’s that? From: [mailto: ] On Behalf Of lilstef23@... Sent: Sunday, January 04, 2009 1:38 PM To: ; pscmoms Subject: Re: steroids Is the 30 mg of prednisone a day a lot? New year...new news. Be the first to know what is making headlines. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 4, 2009 Report Share Posted January 4, 2009 When I was in a UC flare, I was started on 40mg and that was when I was a teenager and a very skinny 140 or so pounds. I do remember that the 40mg was terrible for the side effects such as crankiness, moon face, and a bottomless pit appetite. One thing that did help me through that time was a very intense workout routine. It felt good to have decent energy and helped to reduce the effects of moonface and adding weight from eating so much. Rick From: [mailto: ] On Behalf Of lilstef23@... Sent: Sunday, January 04, 2009 2:38 PM To: ; pscmoms Subject: Re: steroids Is the 30 mg of prednisone a day a lot? New year...new news. Be the first to know what is making headlines. Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.