Guest guest Posted September 28, 2008 Report Share Posted September 28, 2008 I think It should be clarified.. nobody is judging who is using vivaglobin or another product.. the purpose of the post.. was to inform others that adverse reactions have been consistently happening to a group of people on this board.. and it has been reported to the appropiate people.. I reported an adverse reaction to gammagard a few weeks back. and posted it... as well as made a report..( Baxter says they never got one) This board is set up to share .. info.. both good and bad.. Of the children who have had issues .. to my knowledge is 4 on this board.. it is significant..and devasting.. not walking or talking again from the use of product.. or losing your child any way neurologically. warrants a post to let others know.. Doctors in and outside the field.. are aware.. and see it often.. ie Neurologists.. especially.. pulmonolists.. geneticists..etc. and if the reporting is not being done unbiased.. there is an issue of safety for the people using it.. I am thankul,.. and feel not so alone.. that an adverse reaction has happened to others.. maybe we can change some of the labels.. \ Kathleen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 28, 2008 Report Share Posted September 28, 2008 My daughter has not used vivaglobin for a while now as when she did use it she had an adverse reaction of her heart rate going sky high and eyes rolling into the back of her head, rash all over and trouble breathing. We were on our way home and rushed her to the hospital. We were told to never use it again and we have not. Lorri ( CIVD18 years old) From: [mailto: ] On Behalf Of Kathleen Sent: Sunday, September 28, 2008 8:37 AM Subject: Defending what???? I think It should be clarified.. nobody is judging who is using vivaglobin or another product.. the purpose of the post.. was to inform others that adverse reactions have been consistently happening to a group of people on this board.. and it has been reported to the appropiate people.. I reported an adverse reaction to gammagard a few weeks back. and posted it... as well as made a report..( Baxter says they never got one) This board is set up to share .. info.. both good and bad.. Of the children who have had issues .. to my knowledge is 4 on this board.. it is significant..and devasting.. not walking or talking again from the use of product.. or losing your child any way neurologically. warrants a post to let others know.. Doctors in and outside the field.. are aware.. and see it often.. ie Neurologists.. especially.. pulmonolists.. geneticists..etc. and if the reporting is not being done unbiased.. there is an issue of safety for the people using it.. I am thankul,.. and feel not so alone.. that an adverse reaction has happened to others.. maybe we can change some of the labels.. \ Kathleen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 29, 2008 Report Share Posted September 29, 2008 Hello everyone, My first response was to feel as though we were " wrong " for using Viva. Then, I realized that it was...a first response. I think just about everyone on here has been told at least once that we were just an " overprotective mom. Nothing was wrong with our child, " and we have had to fight to get a proper diagnosis. I know personally, my son was misdiagnosed so many times, that I started to think I was a little crazy, and started to doubt myself. If I heard one more time that it was just asthma...grrr. I appreciate the exchange of info on this board, and everyone's opinion. But, anything that is said on here should be taken with a grain of salt. We are not medical professionals, just moms that have been through the wringer, and used to fighting for our kiddos. As for us, we think Viva is a Godsend. It has done wonders for my son and completely changed his life. We are lucky. IVIG gave us the Neurological defiencies. Am I concerned that all of the adverse reactions seem to be covered up by the company? Am I hurting for the parents that have children that have been affected? YES! Would I have been more concerned, had I known? Yes. Would not take that chance, knowing how my son is now " healthy " and able to have a " normal " life? Heck no! LOL I think that what we have learned is that if your child has a neurological tendency, they should consider something else, or go into it with eyes wide open. When we started SubQ over a year ago, Viva was the only thing my DR would consider, and only because I pushed for it. was the first child in the state to do SubQ, but IVIG was not an option for us any more. Here in central Alabama, home infusions were not an option. We were the only ones the dr knew of needing it, and 's reactions would not permit it being done outside of a hospital setting. I respect everyone's opinion, and want to hear them. I want to hear everyone's experiences. I want to go into any treatment with my eyes wide open. Every child is different and responds differently to different medications. We happen to have had a wonderful experience with Viva, but should things change, so would we. If my son develops neurological problems, I now know to look to the product...not jump to other conclusions. Thanks to all for sharing your knowledge and experiences. You can't know how much everyone on here means to me. I am not alone! www.caringbridge.org/visit/alexsmith @...: kkcrt06@...: Sun, 28 Sep 2008 15:36:46 +0000Subject: Defending what???? I think It should be clarified.. nobody is judging who is using vivaglobin or another product..the purpose of the post.. was to inform others that adverse reactions have been consistently happening to a group of people on this board.. and it has been reported to the appropiate people.. I reported an adverse reaction to gammagard a few weeks back. and posted it... as well as made a report..( Baxter says they never got one) This board is set up to share .. info.. both good and bad.. Of the children who have had issues .. to my knowledge is 4 on this board.. it is significant..and devasting.. not walking or talking again from the use of product.. or losing your child any way neurologically. warrants a post to let others know.. Doctors in and outside the field.. are aware.. and see it often.. ie Neurologists.. especially.. pulmonolists.. geneticists..etc.and if the reporting is not being done unbiased.. there is an issue of safety for the people using it.. I am thankul,.. and feel not so alone.. that an adverse reaction has happened to others.. maybe we can change some of the labels.. \Kathleen _________________________________________________________________ Stay up to date on your PC, the Web, and your mobile phone with Windows Live. http://clk.atdmt.com/MRT/go/msnnkwxp1020093185mrt/direct/01/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 29, 2008 Report Share Posted September 29, 2008 - Hi, It was not just Vivaglobin... that we were talking about.. we all have had different experiences.. both on and off product and that it is happening on different products..both Intravenous..and sub q .. with varying symptoms..amoung our children..that are not recorded on the product handout. I guess the point is.. to feel so let down by these companies.. with not REALLY taking the information and using it for a greter good.ie labels changes..warnings... There is no need to defend any of our choices.. this is information that is happening to SOME of us.. and information that may or may not apply to anyone else in the future.. This is a potentially serious problem with reporting of symptoms.. to approriate officials.. and after clinincal trials.. they are not obligated to change lables or even list NEW adverse reactions.. it is totally at the drug companies discretion to see if they see it is a problem.. the FDA is the governing agency.. that we need to report things too.. that will and can change lables.. that is how labeling change can happen.. This is not an attack on products. but rather an outrage that labeling has not been changed to reflect what parents and other doctors are seeing as well as reporting.. Please know.. we as parents.. do not need to defend our use of any product or treatment of our children.. Kathleen -- In , laura smith <iamlaurasmith@...> wrote: > > > Hello everyone, > > My first response was to feel as though we were " wrong " for using Viva. Then, I realized that it was...a first response. I think just about everyone on here has been told at least once that we were just an " overprotective mom. Nothing was wrong with our child, " and we have had to fight to get a proper diagnosis. I know personally, my son was misdiagnosed so many times, that I started to think I was a little crazy, and started to doubt myself. If I heard one more time that it was just asthma...grrr. > > I appreciate the exchange of info on this board, and everyone's opinion. But, anything that is said on here should be taken with a grain of salt. We are not medical professionals, just moms that have been through the wringer, and used to fighting for our kiddos. > > As for us, we think Viva is a Godsend. It has done wonders for my son and completely changed his life. We are lucky. IVIG gave us the Neurological defiencies. Am I concerned that all of the adverse reactions seem to be covered up by the company? Am I hurting for the parents that have children that have been affected? YES! Would I have been more concerned, had I known? Yes. Would not take that chance, knowing how my son is now " healthy " and able to have a " normal " life? Heck no! LOL > > I think that what we have learned is that if your child has a neurological tendency, they should consider something else, or go into it with eyes wide open. When we started SubQ over a year ago, Viva was the only thing my DR would consider, and only because I pushed for it. was the first child in the state to do SubQ, but IVIG was not an option for us any more. Here in central Alabama, home infusions were not an option. We were the only ones the dr knew of needing it, and 's reactions would not permit it being done outside of a hospital setting. > I respect everyone's opinion, and want to hear them. I want to hear everyone's experiences. I want to go into any treatment with my eyes wide open. Every child is different and responds differently to different medications. We happen to have had a wonderful experience with Viva, but should things change, so would we. If my son develops neurological problems, I now know to look to the product...not jump to other conclusions. > > Thanks to all for sharing your knowledge and experiences. You can't know how much everyone on here means to me. I am not alone! > > > www.caringbridge.org/visit/alexsmith > > > > > @...: kkcrt06@...: Sun, 28 Sep 2008 15:36:46 +0000Subject: Defending what???? > > > > > I think It should be clarified.. nobody is judging who is using vivaglobin or another product..the purpose of the post.. was to inform others that adverse reactions have been consistently happening to a group of people on this board.. and it has been reported to the appropiate people.. I reported an adverse reaction to gammagard a few weeks back. and posted it... as well as made a report..( Baxter says they never got one) This board is set up to share .. info.. both good and bad.. Of the children who have had issues .. to my knowledge is 4 on this board.. it is significant..and devasting.. not walking or talking again from the use of product.. or losing your child any way neurologically. warrants a post to let others know.. Doctors in and outside the field.. are aware.. and see it often.. ie Neurologists.. especially.. pulmonolists.. geneticists..etc.and if the reporting is not being done unbiased.. there is an issue of safety for the people using it.. I am thankul,.. and feel not so alone.. that an adverse reaction has happened to others.. maybe we can change some of the labels.. \Kathleen > > > > > > _________________________________________________________________ > Stay up to date on your PC, the Web, and your mobile phone with Windows Live. > http://clk.atdmt.com/MRT/go/msnnkwxp1020093185mrt/direct/01/ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 29, 2008 Report Share Posted September 29, 2008 " I guess the point is.. to feel so let down by these companies.. with not REALLY taking the information and using it for a greter good.ie labels changes..warnings... " I second that! This sounds like a book (fiction) I just read about a new diabetes drug. Same scenario exactly (German dr and all!) I agree that we all need to report adverse reactions, don't count on your doctors to do it for you. It was a fiction book, but amazingly similar to this scenario. Wow! I didn't have my feelings hurt. I, at first, responded negativly, before I thought rationally about it. That's why I waited over the weekend to post. I just wanted to make sure that we continue to share our experiences. These are our children. Plasma and the thought of putting a blood product into your child weekly is enough to be worried about. (And yes, I know it is cleaned and tested, but it is a blood product and everyone has stories of transfusions from the 70's and 80's) Even with that, I have to trust that God is watching over my child, when I can't. I just don't want anyone to be turned off or afraid to post their feelings or experiences. This board is for everyone, this is how we learn. @...: kkcrt06@...: Mon, 29 Sep 2008 17:42:13 +0000Subject: Re: Defending what???? - Hi, It was not just Vivaglobin... that we were talking about.. we all have had different experiences.. both on and off product and that it is happening on different products..both Intravenous..and sub q .. with varying symptoms..amoung our children..that are not recorded on the product handout.I guess the point is.. to feel so let down by these companies.. with not REALLY taking the information and using it for a greter good.ie labels changes..warnings...There is no need to defend any of our choices.. this is information that is happening to SOME of us.. and information that may or may not apply to anyone else in the future.. This is a potentially serious problem with reporting of symptoms.. to approriate officials.. and after clinincal trials.. they are not obligated to change lables or even list NEW adverse reactions.. it is totally at the drug companies discretion to see if they see it is a problem.. the FDA is the governing agency.. that we need to report things too.. that will and can change lables.. that is how labeling change can happen..This is not an attack on products. but rather an outrage that labeling has not been changed to reflect what parents and other doctors are seeing as well as reporting..Please know.. we as parents.. do not need to defend our use of any product or treatment of our children..Kathleen-- In , laura smith <iamlaurasmith@...> wrote:>> > Hello everyone,> > My first response was to feel as though we were " wrong " for using Viva. Then, I realized that it was...a first response. I think just about everyone on here has been told at least once that we were just an " overprotective mom. Nothing was wrong with our child, " and we have had to fight to get a proper diagnosis. I know personally, my son was misdiagnosed so many times, that I started to think I was a little crazy, and started to doubt myself. If I heard one more time that it was just asthma...grrr.> > I appreciate the exchange of info on this board, and everyone's opinion. But, anything that is said on here should be taken with a grain of salt. We are not medical professionals, just moms that have been through the wringer, and used to fighting for our kiddos.> > As for us, we think Viva is a Godsend. It has done wonders for my son and completely changed his life. We are lucky. IVIG gave us the Neurological defiencies. Am I concerned that all of the adverse reactions seem to be covered up by the company? Am I hurting for the parents that have children that have been affected? YES! Would I have been more concerned, had I known? Yes. Would not take that chance, knowing how my son is now " healthy " and able to have a " normal " life? Heck no! LOL> > I think that what we have learned is that if your child has a neurological tendency, they should consider something else, or go into it with eyes wide open. When we started SubQ over a year ago, Viva was the only thing my DR would consider, and only because I pushed for it. was the first child in the state to do SubQ, but IVIG was not an option for us any more. Here in central Alabama, home infusions were not an option. We were the only ones the dr knew of needing it, and 's reactions would not permit it being done outside of a hospital setting.> I respect everyone's opinion, and want to hear them. I want to hear everyone's experiences. I want to go into any treatment with my eyes wide open. Every child is different and responds differently to different medications. We happen to have had a wonderful experience with Viva, but should things change, so would we. If my son develops neurological problems, I now know to look to the product...not jump to other conclusions. > > Thanks to all for sharing your knowledge and experiences. You can't know how much everyone on here means to me. I am not alone! > > > www.caringbridge.org/visit/alexsmith> > > > > @...: kkcrt06@...: Sun, 28 Sep 2008 15:36:46 +0000Subject: Defending what????> > > > > I think It should be clarified.. nobody is judging who is using vivaglobin or another product..the purpose of the post.. was to inform others that adverse reactions have been consistently happening to a group of people on this board.. and it has been reported to the appropiate people.. I reported an adverse reaction to gammagard a few weeks back. and posted it... as well as made a report..( Baxter says they never got one) This board is set up to share .. info.. both good and bad.. Of the children who have had issues .. to my knowledge is 4 on this board.. it is significant..and devasting.. not walking or talking again from the use of product.. or losing your child any way neurologically. warrants a post to let others know.. Doctors in and outside the field.. are aware.. and see it often.. ie Neurologists.. especially.. pulmonolists.. geneticists..etc.and if the reporting is not being done unbiased.. there is an issue of safety for the people using it.. I am thankul,.. and feel not so alone.. that an adverse reaction has happened to others.. maybe we can change some of the labels.. \Kathleen > > > > > > __________________________________________________________> Stay up to date on your PC, the Web, and your mobile phone with Windows Live.> http://clk.atdmt.com/MRT/go/msnnkwxp1020093185mrt/direct/01/> > [Non-text portions of this message have been removed]> _________________________________________________________________ Stay up to date on your PC, the Web, and your mobile phone with Windows Live. http://clk.atdmt.com/MRT/go/msnnkwxp1020093185mrt/direct/01/ Quote Link to comment Share on other sites More sharing options...
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