Guest guest Posted April 28, 2001 Report Share Posted April 28, 2001 Thanks Tina - My grandmother (who lives with my parents about 10 miles away) has a button. She's pulled it out once and it happened on a weekend when they were out of town. Her sitter called me and we took her to the ER. they replaced it the next day in the endo lab. My grandmother's is covered with a gauze pad and taped over it but only because she might pull at it if she was reminded it was there. That's about the extent of my experience. Hope things are going well. Ursula Holleman Macey's mom (5 yr. old with CVID, asthma, sinus disease, GERD, kidney reflux, Sensory Integration Disorder, Diabetes Insipidus) http://home.att.net/~maceyh/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 14, 2001 Report Share Posted May 14, 2001 Tina, I would like to see that protocol if you have time to fax it to me, please. My fax # is (313)821-5626. Thanks! Beth, Mom to Wade, 14, CVID (no subject) Hi everyone: Well we spent the last several days seeing one MD after another. First the immuno, then the ENT. The Immuno agrees that Mike needs to go back on IVIG YESTERDAY! He offered us to be part of a Clinical trial study called B-Lymphocyte Stimulator. The study sponsor is Human Genome Sciences in Rockville land. Supposedly this study is for 18 years and older though they will take Mike at 16. This product supposedly increase the Gamma levels in the body by working on the B cells and can lead to not needing as much IVIG or not at all. I have the protocol here and have decided not to participate in this study right now for other reasons. Has anyone else heard of this study? I can fax the protocol if anyone is interested in seeing it. Tina Mike CVID JRA ASTHMA PAN SINUSITIS This forum is open to parents and caregivers of children diagnosed with a Primary Immune Deficiency. Opinions or medical advice stated here are the sole responsibility of the poster and should not be taken as professional advice. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 14, 2001 Report Share Posted May 14, 2001 Tina, I would like to see that protocol if you have time to fax it to me, please. My fax # is (313)821-5626. Thanks! Beth, Mom to Wade, 14, CVID (no subject) Hi everyone: Well we spent the last several days seeing one MD after another. First the immuno, then the ENT. The Immuno agrees that Mike needs to go back on IVIG YESTERDAY! He offered us to be part of a Clinical trial study called B-Lymphocyte Stimulator. The study sponsor is Human Genome Sciences in Rockville land. Supposedly this study is for 18 years and older though they will take Mike at 16. This product supposedly increase the Gamma levels in the body by working on the B cells and can lead to not needing as much IVIG or not at all. I have the protocol here and have decided not to participate in this study right now for other reasons. Has anyone else heard of this study? I can fax the protocol if anyone is interested in seeing it. Tina Mike CVID JRA ASTHMA PAN SINUSITIS This forum is open to parents and caregivers of children diagnosed with a Primary Immune Deficiency. Opinions or medical advice stated here are the sole responsibility of the poster and should not be taken as professional advice. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 7, 2001 Report Share Posted November 7, 2001 le, Sounds like is terribly frustrated with having to wait to be seen & the general run-around that he gets when he is sick. Any possibility of forwarding this e-mail on to the drs (with 's permission, of course). Maybe that would give them an eye-opening experience. Hope he gets some relief soon. Ray, mother to Tabitha (age 6), Autumn, age 3 (IgG Def., asthma, chronic sinusitis, and allergies), and Duncan Avery, 5 months Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 7, 2001 Report Share Posted November 7, 2001 le, Sounds like is terribly frustrated with having to wait to be seen & the general run-around that he gets when he is sick. Any possibility of forwarding this e-mail on to the drs (with 's permission, of course). Maybe that would give them an eye-opening experience. Hope he gets some relief soon. Ray, mother to Tabitha (age 6), Autumn, age 3 (IgG Def., asthma, chronic sinusitis, and allergies), and Duncan Avery, 5 months Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 1, 2002 Report Share Posted January 1, 2002 Hi Dottie I remember you, I sent an invite maybe you can get in that way? I checked the member names on the site and there is no ID for Yahoo that I can see. Maybe it is not public info. I tried the one you gave. Maybe you can buzz me my Yahoo ID is honeysheri Hope you find your way back to us. Take Care Sheri (no subject) HI Gang, I tried to register last night with an invitation,But do not see my name or that it has recieved .I don't know how many people remember me Dottie from Hawaii. Cat,Tom, can anyone help me?ITs TWCkmbg @aol.com. I registered at yahoo as Dottie 156 .Hope everyone had a good New Year,And can give me a hand. Love & Aloha Dottie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 1, 2002 Report Share Posted January 1, 2002 Hi Dottie I remember you, I sent an invite maybe you can get in that way? I checked the member names on the site and there is no ID for Yahoo that I can see. Maybe it is not public info. I tried the one you gave. Maybe you can buzz me my Yahoo ID is honeysheri Hope you find your way back to us. Take Care Sheri (no subject) HI Gang, I tried to register last night with an invitation,But do not see my name or that it has recieved .I don't know how many people remember me Dottie from Hawaii. Cat,Tom, can anyone help me?ITs TWCkmbg @aol.com. I registered at yahoo as Dottie 156 .Hope everyone had a good New Year,And can give me a hand. Love & Aloha Dottie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 2, 2002 Report Share Posted January 2, 2002 HI DOTTIE!!!! How are you??? Long time, no type!!! Fill us in you beautiful darling -- I have missed you! Kate Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 2, 2002 Report Share Posted January 2, 2002 HI DOTTIE!!!! How are you??? Long time, no type!!! Fill us in you beautiful darling -- I have missed you! Kate Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 26, 2002 Report Share Posted February 26, 2002 Keri, I can't answer your question of the Prednisone, but I do know it's masks symptoms and helps a lot at times of increased activity. Sorry to hear you had to be hospitalized, but glad that you did go in and were seen. I'll send thoughts of a quick recovery, rest if you can. Till soon, Melt (no subject) > Hi everyone- > I've learned alot from all of you through this website so I was hoping to get > some more info. I was just released from the hospital today, I went in to > the ER saturday with chest pain & shortness of breath (i am 27 years old). > Having Pericarditis about 9 months ago I thought that was what was happening. > They ran an EKG-normal, Echocardiogram-normal, x-ray-normal. Then my rhemmy > came in & said up her prednisone. They gave me 40mg through my IV within > hours I started feeling better. I could'nt believe thats all it was. > Has anyone ever had this happen to them? I would be interested in knowing. > My rhemmy was being so careful in not dropping me to quick off the prednisone > because of the side effects and danger it can cause. I don't know what > happened. > Thanks for all the good advice & support. > Stay pain free- > Keri > p.s. I was just diagnosed in June of 2001. > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 26, 2002 Report Share Posted February 26, 2002 Keri, I can't answer your question of the Prednisone, but I do know it's masks symptoms and helps a lot at times of increased activity. Sorry to hear you had to be hospitalized, but glad that you did go in and were seen. I'll send thoughts of a quick recovery, rest if you can. Till soon, Melt (no subject) > Hi everyone- > I've learned alot from all of you through this website so I was hoping to get > some more info. I was just released from the hospital today, I went in to > the ER saturday with chest pain & shortness of breath (i am 27 years old). > Having Pericarditis about 9 months ago I thought that was what was happening. > They ran an EKG-normal, Echocardiogram-normal, x-ray-normal. Then my rhemmy > came in & said up her prednisone. They gave me 40mg through my IV within > hours I started feeling better. I could'nt believe thats all it was. > Has anyone ever had this happen to them? I would be interested in knowing. > My rhemmy was being so careful in not dropping me to quick off the prednisone > because of the side effects and danger it can cause. I don't know what > happened. > Thanks for all the good advice & support. > Stay pain free- > Keri > p.s. I was just diagnosed in June of 2001. > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 26, 2002 Report Share Posted February 26, 2002 Hi Keri I have been short of breath and had severe chest pain since I came home from the hospital in 11-99. It settle down some what since then. I immediately seen relief with the prednisone 160mg then, now down to 10mg and 15mg of MTX. This combination seems to work good for me, right now anyway. Hope to get off the prednisone, really hope to get off all meds someday lol.The shortness of breath is still there, I recently was tested for lung capacity (I don't know the correct medical term for this test) it showed that I now have asthma, so I now use an inhaler when needed. I have asked about Pleuritus and Pericarditus as a cause of the chest pain but have not got an answer. I go to the Dr. this Friday 3-1-02, maybe they will have some answers then. Hope this info helps. rjones20@... (no subject) Hi everyone- I've learned alot from all of you through this website so I was hoping to get some more info. I was just released from the hospital today, I went in to the ER saturday with chest pain & shortness of breath (i am 27 years old). Having Pericarditis about 9 months ago I thought that was what was happening. They ran an EKG-normal, Echocardiogram-normal, x-ray-normal. Then my rhemmy came in & said up her prednisone. They gave me 40mg through my IV within hours I started feeling better. I could'nt believe thats all it was. Has anyone ever had this happen to them? I would be interested in knowing. My rhemmy was being so careful in not dropping me to quick off the prednisone because of the side effects and danger it can cause. I don't know what happened. Thanks for all the good advice & support. Stay pain free- Keri p.s. I was just diagnosed in June of 2001. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 26, 2002 Report Share Posted February 26, 2002 Hi Keri I have been short of breath and had severe chest pain since I came home from the hospital in 11-99. It settle down some what since then. I immediately seen relief with the prednisone 160mg then, now down to 10mg and 15mg of MTX. This combination seems to work good for me, right now anyway. Hope to get off the prednisone, really hope to get off all meds someday lol.The shortness of breath is still there, I recently was tested for lung capacity (I don't know the correct medical term for this test) it showed that I now have asthma, so I now use an inhaler when needed. I have asked about Pleuritus and Pericarditus as a cause of the chest pain but have not got an answer. I go to the Dr. this Friday 3-1-02, maybe they will have some answers then. Hope this info helps. rjones20@... (no subject) Hi everyone- I've learned alot from all of you through this website so I was hoping to get some more info. I was just released from the hospital today, I went in to the ER saturday with chest pain & shortness of breath (i am 27 years old). Having Pericarditis about 9 months ago I thought that was what was happening. They ran an EKG-normal, Echocardiogram-normal, x-ray-normal. Then my rhemmy came in & said up her prednisone. They gave me 40mg through my IV within hours I started feeling better. I could'nt believe thats all it was. Has anyone ever had this happen to them? I would be interested in knowing. My rhemmy was being so careful in not dropping me to quick off the prednisone because of the side effects and danger it can cause. I don't know what happened. Thanks for all the good advice & support. Stay pain free- Keri p.s. I was just diagnosed in June of 2001. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 26, 2002 Report Share Posted February 26, 2002 Hi Keri I have been short of breath and had severe chest pain since I came home from the hospital in 11-99. It settle down some what since then. I immediately seen relief with the prednisone 160mg then, now down to 10mg and 15mg of MTX. This combination seems to work good for me, right now anyway. Hope to get off the prednisone, really hope to get off all meds someday lol.The shortness of breath is still there, I recently was tested for lung capacity (I don't know the correct medical term for this test) it showed that I now have asthma, so I now use an inhaler when needed. I have asked about Pleuritus and Pericarditus as a cause of the chest pain but have not got an answer. I go to the Dr. this Friday 3-1-02, maybe they will have some answers then. Hope this info helps. rjones20@... (no subject) Hi everyone- I've learned alot from all of you through this website so I was hoping to get some more info. I was just released from the hospital today, I went in to the ER saturday with chest pain & shortness of breath (i am 27 years old). Having Pericarditis about 9 months ago I thought that was what was happening. They ran an EKG-normal, Echocardiogram-normal, x-ray-normal. Then my rhemmy came in & said up her prednisone. They gave me 40mg through my IV within hours I started feeling better. I could'nt believe thats all it was. Has anyone ever had this happen to them? I would be interested in knowing. My rhemmy was being so careful in not dropping me to quick off the prednisone because of the side effects and danger it can cause. I don't know what happened. Thanks for all the good advice & support. Stay pain free- Keri p.s. I was just diagnosed in June of 2001. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 26, 2012 Report Share Posted April 26, 2012 Learn h0w t0 turn successfuI at h0me http://training-and-cooking.com/httpzdjjkalf-8-1.php?yvyfprof=459 ____________ " This fact, in essence, is, that the angle of thekite is the great factor in flight next to the powernecessary to hold it.Aside from this, thecomparison between kites and aeroplanes is of nopractical value. " © florendra willesone Thu, 26 Apr 2012 18:26:19 Quote Link to comment Share on other sites More sharing options...
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