Guest guest Posted April 25, 2009 Report Share Posted April 25, 2009 Before xolair I had gotten to the point that I itched all the time. Have you had the ige and igg food tests. Milk is my biggy but I have dozens of other food allegies as well. Stick with probiotics and the canditda diet-it helps me. I am constantly gobbling probiotics and I take Nystatin elixir and diflucan. ________________________________ From: gigles_1955 <fgigles55@...> Sent: Friday, April 24, 2009 11:11:20 AM Subject: [ ] xolair decision my daughter has been approved and is to start xolair shots(2 shots every 2 weeks) in a week ans a half. She has asthma but we are doing this more off label for her severe allergic skin. When I started the ball rolling on this her skin was extremely itchy, red all over and rash pretty much everywhere, She has been this way for 4+years, getting worse all the time. She also had hives on and off. My dd has been on heavy meds. to calm her skin like immune suppresants, doxepin, mega dose antihistamines, etc.(none of which helped) been doped up for weeks at a time to get much needed sleep. She has been seeing a naturopatic dr. and is on various supplements( natural anti histamines, natural anti imflammatory) probiotics, and just put on vit D because her levels are very low. Also on dairy free diet.the redness is less, rash less mostly on her arms and wrist, no hives(yeah) and well the itching is still there. I don't know if it is the supplements or her immune system kicked in to help or what caused the change. Ok, the point of this. I don't know what to do. I have fought for the xolair but now that she is better(about 30%) than she has been in years I am afraid to start the shots in fear things may go back to where they were, that xolair might cause reactions. Because of her high IgE and all her allergies she will be getting the maximum dose every two weeks. should I leave things alone because there is improvment or do you think xolair will help even more? make things worse? I know most of you are on for asthma but there have been some that xolair has helped their skin so pls. help if you have any suggestion. thanks for listening and for any help you can give. jean Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 25, 2009 Report Share Posted April 25, 2009 Thanks for the response. Thats where she is at, itching all the time. She has had her IgE levels checked and has had the rast test for some foods but that was years ago. I'm not sure if thats what you mean by ige food test. My dd is going to have a blood test next week called the ALCAT test which is for Igg and test for foods, additives, environmental chemicals, and molds. It is for food intolerence. Jean > > Before xolair I had gotten to the point that I itched all the time. > Have you had the ige and igg food tests. Milk is my biggy but I have dozens of other food allegies as well. > Stick with probiotics and the canditda diet-it helps me. I am constantly gobbling probiotics and I take Nystatin elixir and diflucan. > > > > > ________________________________ > From: gigles_1955 <fgigles55@...> > > Sent: Friday, April 24, 2009 11:11:20 AM > Subject: [ ] xolair decision > > > > > > my daughter has been approved and is to start xolair shots(2 shots every 2 weeks) in a week ans a half. She has asthma but we are doing this more off label for her severe allergic skin. When I started the ball rolling on this her skin was extremely itchy, red all over and rash pretty much everywhere, She has been this way for 4+years, getting worse all the time. She also had hives on and off. My dd has been on heavy meds. to calm her skin like immune suppresants, doxepin, mega dose antihistamines, etc.(none of which helped) been doped up for weeks at a time to get much needed sleep. > > She has been seeing a naturopatic dr. and is on various supplements( natural anti histamines, natural anti imflammatory) probiotics, and just put on vit D because her levels are very low. Also on dairy free diet.the redness is less, rash less mostly on her arms and wrist, no hives(yeah) and well the itching is still there. I don't know if it is the supplements or her immune system kicked in to help or what caused the change. > > Ok, the point of this. I don't know what to do. I have fought for the xolair but now that she is better(about 30%) than she has been in years I am afraid to start the shots in fear things may go back to where they were, that xolair might cause reactions. Because of her high IgE and all her allergies she will be getting the maximum dose every two weeks. > > should I leave things alone because there is improvment or do you think xolair will help even more? make things worse? I know most of you are on for asthma but there have been some that xolair has helped their skin so pls. help if you have any suggestion. thanks for listening and for any help you can give. jean > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 25, 2009 Report Share Posted April 25, 2009 I don't know how to help you other than to say the following: If your daughter has been suffering to the extent you have described repeatedly to this group, 30% would not be enough for me to not take Xolair - I would still take it, if it were me. Further, it's always possible that the current improvement is only temporary. Tough, tough, tough to be a parent of a very allergic child. I witnessed my parents suffer through it, and I can still hear their voices change whenever I'm having trouble with my breathing and am talking to them on the phone. I so sympathize with you and what hard decisions you're making. I'm glad the vit D and supplements are helping. Let us know what you decide. Addy > > > > Before xolair I had gotten to the point that I itched all the time. > > Have you had the ige and igg food tests. Milk is my biggy but I have dozens of other food allegies as well. > > Stick with probiotics and the canditda diet-it helps me. I am constantly gobbling probiotics and I take Nystatin elixir and diflucan. > > > > > > > > > > ________________________________ > > From: gigles_1955 <fgigles55@> > > > > Sent: Friday, April 24, 2009 11:11:20 AM > > Subject: [ ] xolair decision > > > > > > > > > > > > my daughter has been approved and is to start xolair shots(2 shots every 2 weeks) in a week ans a half. She has asthma but we are doing this more off label for her severe allergic skin. When I started the ball rolling on this her skin was extremely itchy, red all over and rash pretty much everywhere, She has been this way for 4+years, getting worse all the time. She also had hives on and off. My dd has been on heavy meds. to calm her skin like immune suppresants, doxepin, mega dose antihistamines, etc.(none of which helped) been doped up for weeks at a time to get much needed sleep. > > > > She has been seeing a naturopatic dr. and is on various supplements( natural anti histamines, natural anti imflammatory) probiotics, and just put on vit D because her levels are very low. Also on dairy free diet.the redness is less, rash less mostly on her arms and wrist, no hives(yeah) and well the itching is still there. I don't know if it is the supplements or her immune system kicked in to help or what caused the change. > > > > Ok, the point of this. I don't know what to do. I have fought for the xolair but now that she is better(about 30%) than she has been in years I am afraid to start the shots in fear things may go back to where they were, that xolair might cause reactions. Because of her high IgE and all her allergies she will be getting the maximum dose every two weeks. > > > > should I leave things alone because there is improvment or do you think xolair will help even more? make things worse? I know most of you are on for asthma but there have been some that xolair has helped their skin so pls. help if you have any suggestion. thanks for listening and for any help you can give. jean > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 26, 2009 Report Share Posted April 26, 2009 Thanks Addy. She is scheduled a week from Monday to start. Yes she has suffered to the extend I have posted and I agree 30% isn't much improvment. My concern was that this is the first time she has shown any improvment and I didn't know if xolair would send her back to square one. But it is possible that this improvement is only temp. so I guess we need to try.d jean On Sat, Apr 25, 2009 at 4:24 PM, pyle456 <jamcculloch2@...> wrote: > > > > > I don't know how to help you other than to say the following: > > If your daughter has been suffering to the extent you have described > repeatedly to this group, 30% would not be enough for me to not take Xolair > - I would still take it, if it were me. Further, it's always possible that > the current improvement is only temporary. > > Tough, tough, tough to be a parent of a very allergic child. I witnessed my > parents suffer through it, and I can still hear their voices change whenever > I'm having trouble with my breathing and am talking to them on the phone. I > so sympathize with you and what hard decisions you're making. > > I'm glad the vit D and supplements are helping. > > Let us know what you decide. > > Addy > > > > > > > > Before xolair I had gotten to the point that I itched all the time. > > > Have you had the ige and igg food tests. Milk is my biggy but I have > dozens of other food allegies as well. > > > Stick with probiotics and the canditda diet-it helps me. I am > constantly gobbling probiotics and I take Nystatin elixir and diflucan. > > > > > > > > > > > > > > > ________________________________ > > > From: gigles_1955 <fgigles55@> > > > < %40> > > > Sent: Friday, April 24, 2009 11:11:20 AM > > > Subject: [ ] xolair decision > > > > > > > > > > > > > > > > > > my daughter has been approved and is to start xolair shots(2 shots > every 2 weeks) in a week ans a half. She has asthma but we are doing this > more off label for her severe allergic skin. When I started the ball rolling > on this her skin was extremely itchy, red all over and rash pretty much > everywhere, She has been this way for 4+years, getting worse all the time. > She also had hives on and off. My dd has been on heavy meds. to calm her > skin like immune suppresants, doxepin, mega dose antihistamines, etc.(none > of which helped) been doped up for weeks at a time to get much needed sleep. > > > > > > > She has been seeing a naturopatic dr. and is on various supplements( > natural anti histamines, natural anti imflammatory) probiotics, and just put > on vit D because her levels are very low. Also on dairy free diet.the > redness is less, rash less mostly on her arms and wrist, no hives(yeah) and > well the itching is still there. I don't know if it is the supplements or > her immune system kicked in to help or what caused the change. > > > > > > Ok, the point of this. I don't know what to do. I have fought for the > xolair but now that she is better(about 30%) than she has been in years I am > afraid to start the shots in fear things may go back to where they were, > that xolair might cause reactions. Because of her high IgE and all her > allergies she will be getting the maximum dose every two weeks. > > > > > > should I leave things alone because there is improvment or do you think > xolair will help even more? make things worse? I know most of you are on for > asthma but there have been some that xolair has helped their skin so pls. > help if you have any suggestion. thanks for listening and for any help you > can give. jean > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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