Guest guest Posted May 20, 1999 Report Share Posted May 20, 1999 Ursula: My Daughter reacted to Varivax and so have 7,000 other children in the US. We were told not to give her anything with a live attentuated virus. She had no reaction to MMR and of course she does nothing with pneumovax. Does anyone know if they have developed the new on with a protein additive? They did this with her HIB and it tricked her body into reacting to it. Sincerely annette mom to cvid,asthmatic > >Reply-To: PedPIDonelist >To: <PedPIDonelist> >Subject: Re: immunizations >Date: Wed, 19 May 1999 20:18:05 -0400 > > > >Macey has been exempted from all future vaccinations. she did have the >Injectable polio before diagnosis though. Do others have a release from >immunizations or does it depend on what the immunization is? > >Ursula Holleman >Macey's mom (4 yr. old with CVID, asthma, GERD, sinus disease, grade I >left kidney reflux, Sensory Integration Disorder) >ICQ # 28592349 >http://www.icq.com > >PedPID email list archives >http://www.netpage.org/PedPID/_PedPID/ > >PedPID email list introductions >http://www.netpage.org/PedPID/_PedPID/introduction.htm > > > > >------------------------------------------------------------------------ >How many communities do you think join ONElist each day? >http://www.onelist.com >More than 1,000! Create yours now! >------------------------------------------------------------------------ >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. _______________________________________________________________ Get Free Email and Do More On The Web. Visit http://www.msn.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 20, 1999 Report Share Posted May 20, 1999 Dear Gail : thanks for the information I am going to contact National Jewish about the conjegated vaccine. They should know Thank again, annette mom to cvid asthmatic >From: G6517@... >Reply-To: PedPIDonelist >To: PedPIDonelist >Subject: Re: immunizations >Date: Thu, 20 May 1999 09:50:54 EDT > >From: G6517@... > >Annette, > > I have heard of a " conjugated " pneumovax. I don't know whether it is >widely available yet. Some others might have more info on this. I haven't >heard of a MMR > >Hope this helps > >Gail >Kinsey - CVID >IDF Volunteer > >------------------------------------------------------------------------ >Looking to expand your world? >http://www.onelist.com >ONElist has nearly 150,000 e-mail communities from which to chose! >------------------------------------------------------------------------ >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. > _______________________________________________________________ Get Free Email and Do More On The Web. Visit http://www.msn.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 20, 1999 Report Share Posted May 20, 1999 Annette, I have heard of a " conjugated " pneumovax. I don't know whether it is widely available yet. Some others might have more info on this. I haven't heard of a MMR Hope this helps Gail Kinsey - CVID IDF Volunteer Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 23, 1999 Report Share Posted May 23, 1999 Just for those who may be interested....there is a conjugated pneummovax, it was used to test the Cd5-Cd19 PID children. It is not wide area available. Just thought I would add that bit of info. Autumn mom to Mark Cd5-Cd19 PID/ Samter's syndrome, A1A, GERD Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 23, 1999 Report Share Posted May 23, 1999 Dear Autumn: How are you? Could you tell me what region the pneumovax is being used? Thanks, annette mom cvid asthmatic >From: Autti@... >Reply-To: PedPIDonelist >To: PedPIDonelist >Subject: Re: immunizations >Date: Sun, 23 May 1999 17:37:44 EDT > >From: Autti@... > >Just for those who may be interested....there is a conjugated pneummovax, >it >was used to test the Cd5-Cd19 PID children. It is not wide area available. > >Just thought I would add that bit of info. > >Autumn mom to Mark Cd5-Cd19 PID/ Samter's syndrome, A1A, GERD > >------------------------------------------------------------------------ >ONElist: bringing the world together. >http://www.onelist.com >Join a new list today! >------------------------------------------------------------------------ >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. _______________________________________________________________ Get Free Email and Do More On The Web. Visit http://www.msn.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 23, 1999 Report Share Posted May 23, 1999 Sue - I will definitely get back to you on your questions, as soon as my exams are over. If you don't hear back by Friday, could you please send them again? I need to look a couple things up and don't have time to until after my last exam, and I'm pretty sure I may forget between now and then! Sorry for the delay - just pressed for time and sleep right now! Autumn - I'm confused about some details of Mark's PID, and maybe you know the answers, maybe not, but figured I'd ask... you said they used the conjugated vaccine... does that mean that the boys with CD5-CD19 have a problem with the interaction between B and T-cells? Or is it " just " (ha!) a B-cell problem? I know none of them made any response to the pneumovax, but I just assumed that they used the old pneumovax that was only B-cell dependent in its response, but I would have guessed that since they had some T-cells, they would be able to trick the cells into making some antibodies when they got the T-cells involved. I just assumed they didn't have a response to the pneumovax because they didn't have B-cells that were capable of making antibodies. Oop... just answered my own question - never mind! I just realized that even with the tricking of the T-cells, you still ultimately need the B-cells to churn out the antibody, and I know the boys don't do that well. I think when you conjugate it, normally, people with any small amount of B-cell function will get their B-cells tricked into activation/differentiation, etc., but I guess when your B-cells can't do that, they can't do it, no matter how many things you activate, etc - if the cells aren't capable of making specific antibodies, they're just not. So do the boys make any Ig's to things that aren't totally B-cell dependent (like Tetanus or Diphtheria)? Do they think that it makes the boys (for lack of a better term) functionally agammaglobulinemic? I know that they have some Ig's but they don't work, and I wasn't sure if it was because they were primitive Ig's (can't be made to fight a specific bacteria by going through progressive steps to make them more powerful and selective), or because the B and/or T-cells aren't being activated properly. Do they think there's a secondary problem with the T/B cell interaction process, too? I think I need to go read that article by Dr. H and get myself totally up to speed, though. Ah, next week - after exams! I know I've asked lots of questions... sorry - I wish I understood the problems better, though. Perhaps someday I'll get to hear Dr. H talk about it, and then I could really sort it out. If you don't have all the answers, don't worry. Something tells me there aren't complete answers (yet) for all of the questions I've asked. Take care, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 23, 1999 Report Share Posted May 23, 1999 Autumn, I'm in the dark here, What's conjugated pneummovax? And what's it used for? Wife to Tom, Mom to 6 yr Zach, ???(don't know the specific type) PID, GERD, chronic sinusitis, IVIG, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 23, 1999 Report Share Posted May 23, 1999 Hrib-Karpinski wrote: > > > > Autumn, > > I'm in the dark here, What's conjugated pneummovax? And what's it used for? > > > Wife to Tom, Mom to 6 yr Zach, ???(don't know the specific type) PID, GERD, > chronic sinusitis, IVIG, > > ------------------------------------------------------------------------ > What was YOUR favorite part?! > http://www.onelist.com > Tell other Star Wars fans at ONElist! > ------------------------------------------------------------------------ > 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. Hi everyone, We are back from our trip and we had a good time. I have a question about reactions to IVIG. Kelsey dident have any benadryl this round and about 3 days after the treatment she has a headache, Spiked temps and vomited. Could that be due to the IVIG? Amber Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 23, 1999 Report Share Posted May 23, 1999 >Hi everyone, >We are back from our trip and we had a good time. I have a question >about reactions to IVIG. Kelsey dident have any benadryl this round and >about 3 days after the treatment she has a headache, Spiked temps and >vomited. Could that be due to the IVIG? >Amber Amber...Zach had the same symptoms, except his lasted about 5 days. Or at least that's when the vomit came. I have to ask you, which product did you get this time. We got Polygam and our Immuno is suspicious about it. This was the first time Zach got it. He usually gets Veno. But the pharmacy was out so we just got the Poly. Wife to Tom, Mom to 6 yr Zach, ???(don't know the specific type) PID, GERD, chronic sinusitis, IVIG, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 24, 1999 Report Share Posted May 24, 1999 Kim: Just a line to wish you good luck on the exams. Get plenty of rest and ace the tests. annette mom cvid,asthmatic > >Reply-To: PedPIDonelist >To: PedPIDonelist >Subject: Re: immunizations >Date: Sun, 23 May 1999 23:32:52 +0000 > > > >Sue - I will definitely get back to you on your questions, as soon as my >exams are over. If you don't hear back by Friday, could you please send >them again? I need to look a couple things up and don't have time to >until after my last exam, and I'm pretty sure I may forget between now >and then! Sorry for the delay - just pressed for time and sleep right now! > >Autumn - I'm confused about some details of Mark's PID, and maybe you >know the answers, maybe not, but figured I'd ask... you said they used >the conjugated vaccine... does that mean that the boys with CD5-CD19 >have a problem with the interaction between B and T-cells? Or is it > " just " (ha!) a B-cell problem? I know none of them made any response to >the pneumovax, but I just assumed that they used the old pneumovax that >was only B-cell dependent in its response, but I would have guessed that >since they had some T-cells, they would be able to trick the cells into >making some antibodies when they got the T-cells involved. I just >assumed they didn't have a response to the pneumovax because they didn't >have B-cells that were capable of making antibodies. Oop... just >answered my own question - never mind! I just realized that even with >the tricking of the T-cells, you still ultimately need the B-cells to >churn out the antibody, and I know the boys don't do that well. I think >when you conjugate it, normally, people with any small amount of B-cell >function will get their B-cells tricked into activation/differentiation, >etc., but I guess when your B-cells can't do that, they can't do it, no >matter how many things you activate, etc - if the cells aren't capable >of making specific antibodies, they're just not. So do the boys make >any Ig's to things that aren't totally B-cell dependent (like Tetanus or >Diphtheria)? Do they think that it makes the boys (for lack of a better >term) functionally agammaglobulinemic? I know that they have some Ig's >but they don't work, and I wasn't sure if it was because they were >primitive Ig's (can't be made to fight a specific bacteria by going >through progressive steps to make them more powerful and selective), or >because the B and/or T-cells aren't being activated properly. Do they >think there's a secondary problem with the T/B cell interaction process, >too? I think I need to go read that article by Dr. H and get myself >totally up to speed, though. Ah, next week - after exams! I know I've >asked lots of questions... sorry - I wish I understood the problems >better, though. Perhaps someday I'll get to hear Dr. H talk about it, >and then I could really sort it out. If you don't have all the answers, >don't worry. Something tells me there aren't complete answers (yet) for >all of the questions I've asked. > >Take care, > > >------------------------------------------------------------------------ >ONElist: where real people with real interests get connected. >http://www.onelist.com >Join a new list today! >------------------------------------------------------------------------ >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. > _______________________________________________________________ Get Free Email and Do More On The Web. Visit http://www.msn.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 24, 1999 Report Share Posted May 24, 1999 Hrib-Karpinski wrote: > > > > >Hi everyone, > >We are back from our trip and we had a good time. I have a question > >about reactions to IVIG. Kelsey dident have any benadryl this round and > >about 3 days after the treatment she has a headache, Spiked temps and > >vomited. Could that be due to the IVIG? > >Amber > > Amber...Zach had the same symptoms, except his lasted about 5 days. Or at > least that's when the vomit came. I have to ask you, which product did you > get this time. We got Polygam and our Immuno is suspicious about it. This > was the first time Zach got it. He usually gets Veno. But the pharmacy was > out so we just got the Poly. > > > Wife to Tom, Mom to 6 yr Zach, ???(don't know the specific type) PID, GERD, > chronic sinusitis, IVIG, > > ------------------------------------------------------------------------ > ONElist: bringing the world together. > http://www.onelist.com > Join a new list today! > ------------------------------------------------------------------------ > 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. I am so new to this that i dident even know there were different products. This is the first time she had this reaction and the first time we dident use benadryl. Amber Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 24, 1999 Report Share Posted May 24, 1999 Dear Autumn: Thank you very much, I hope to have half the knowledge you and Ursula have some day. Thanks again for sharing let me know how your family is doing. annette mom of cvid,asthmatic >From: Autti@... >Reply-To: PedPIDonelist >To: PedPIDonelist >Subject: Re: immunizations >Date: Mon, 24 May 1999 18:36:18 EDT > >From: Autti@... > >Dear Annette, > >I will have to ask Dr. H where the conjugated pneummovax can be obtained >from. > >As soon as I hear from him I will let you know. > >Autumn mom to Mark Cd5-Cd19 PID/ Samter's syndrome, A1A, GERD > >------------------------------------------------------------------------ >Give back to your community through " Grow to Give. " >http://www.ONElist.com >See homepage for details. >------------------------------------------------------------------------ >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. _______________________________________________________________ Get Free Email and Do More On The Web. Visit http://www.msn.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 24, 1999 Report Share Posted May 24, 1999 Dear Annette, I will have to ask Dr. H where the conjugated pneummovax can be obtained from. As soon as I hear from him I will let you know. Autumn mom to Mark Cd5-Cd19 PID/ Samter's syndrome, A1A, GERD Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 24, 1999 Report Share Posted May 24, 1999 Dear , I am going out on a limb here but from what I have been told about the conjugated pneummovax is like this...it pairs together two different things into one....protien and polysacchride. It is used in the detection of certain humoral defects, hence one of them being the Cd5-Cd19 PID. It is very, very hard to come by and access to it is not easy. When the Cd5 boys were given this they made absolutely no response to it. Some physicians, in fact many, call an inadequate response to the the pneummonia a nonresponder. In the Cd5-Cd19 PID patients make 0's straight down the page not even a smudge of a number is seen. Hope that helps. Autumn mom to Mark Cd5-Cd19 PID/ Samter's syndrome, A1A, GERD Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 24, 1999 Report Share Posted May 24, 1999 Dear Autumn: We were hoping that the conjugated pneumovax would help my daughter to titer or form antibodies. That is what happened after they gave her the conjugated HIB vaccine. But if your boys did not titer to the conjugated pneumovax then it would not probably work for Alissa. Did your boys respond to HIB conjugated vaccine? Thanks, annette >From: Autti@... >Reply-To: PedPIDonelist >To: PedPIDonelist >Subject: Re: immunizations >Date: Mon, 24 May 1999 18:45:51 EDT > >From: Autti@... > >Dear , > >I am going out on a limb here but from what I have been told about the >conjugated pneummovax is like this...it pairs together two different things >into one....protien and polysacchride. It is used in the detection of >certain humoral defects, hence one of them being the Cd5-Cd19 PID. It is >very, very hard to come by and access to it is not easy. When the Cd5 boys >were given this they made absolutely no response to it. Some physicians, >in >fact many, call an inadequate response to the the pneummonia a >nonresponder. >In the Cd5-Cd19 PID patients make 0's straight down the page not even a >smudge of a number is seen. Hope that helps. > >Autumn mom to Mark Cd5-Cd19 PID/ Samter's syndrome, A1A, GERD > >------------------------------------------------------------------------ >Looking for a new hobby? Want to make a new friend? >http://www.onelist.com >Come join one of the nearly 150,000 e-mail communities at ONElist! >------------------------------------------------------------------------ >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. > _______________________________________________________________ Get Free Email and Do More On The Web. Visit http://www.msn.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 24, 1999 Report Share Posted May 24, 1999 , Your email is far too technical and complicated to answer by email. I will call you with my response. The first abstract is in print and is on-line for your review. To answer one of your questions this PID is a result of a T-cell defect. This is not in the first abstract but was presented to some 15-20 physicians last Tuesday, at the AAAAI conference and to all the families in the US last month. These boys have less then 2% circulating Cd5- cells and a very high expression of Cd5+ b-cells in the peripheral blood. I have mentioned this before and I do believe that you and I have even spoke of this....but the suspicion is that the defect lies within possibly the Il4 (not the receptor...that is present) or the Gamma Interferon, etc., etc., it could be in any number of places...it will take years to understand this PID and what it entails. I hope that you will someday be able to hear the presentation...it was excellent and astonishing. I am sure it is confusing to some as well. Hope this helps. Autumn mom to Mark Cd5-Cd19 PID/ Samter's syndrome, A1A, GERD Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 24, 1999 Report Share Posted May 24, 1999 Dear Amber, Are you able to obtain the results of the vaccine that was given? It is possible that she made a response but not enough protection or antibody to consider it a response. In the Cd5-Cd19 PID they make all 0's. I would call her physician and ask him if there was anything at all on the page or were the titers all 0's. If the answer is the latter, then I would have him call Dr. Hostoffer. Also, in the Cd5-Cd19 PID you would make not response to HIB and none to meningococal. If I can be of any more help please let me know. Autumn mom to Mark Cd5-Cd19 PID/ Samter's syndrome, A1A. GERD Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 24, 1999 Report Share Posted May 24, 1999 Autti@... wrote: > > From: Autti@... > > Dear , > > I am going out on a limb here but from what I have been told about the > conjugated pneummovax is like this...it pairs together two different things > into one....protien and polysacchride. It is used in the detection of > certain humoral defects, hence one of them being the Cd5-Cd19 PID. It is > very, very hard to come by and access to it is not easy. When the Cd5 boys > were given this they made absolutely no response to it. Some physicians, in > fact many, call an inadequate response to the the pneummonia a nonresponder. > In the Cd5-Cd19 PID patients make 0's straight down the page not even a > smudge of a number is seen. Hope that helps. > > Autumn mom to Mark Cd5-Cd19 PID/ Samter's syndrome, A1A, GERD > > ------------------------------------------------------------------------ > Looking for a new hobby? Want to make a new friend? > http://www.onelist.com > Come join one of the nearly 150,000 e-mail communities at ONElist! > ------------------------------------------------------------------------ > 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. That is what they gave to kelsey. They took blood than gave the vaccine. Then 6 weeks later took blood again and found she mounted no responce to it at all. I am not sure what all this means and i called our immunologist last week and he said she had humoral immune deficiency. So what does this mean? Amber Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 24, 1999 Report Share Posted May 24, 1999 Dear Annette, Mark did not make a response to HIB but it was not the conjugated one. The pneummovax that they recieved was conjugated. My son has titers to HIB...he is not Immune Deficient. The three boys (that Dr.Hostoffer treats) with the Cd5-Cd19 PID are the boys that did not make titers to the pneummovax, HIB and Meningococal vaccines. It would probably be helpful to show the web-page to your daughter's physician. To date, there have been no females or adults found with this PID, not to say that they are not out there...they just have not been found. Let me know what they say about this..I am curious. If your daughter did end up having this PID you might want to consider contacting Dr. Hostoffer as he is the physician that is researching it. Good luck, Autumn mom to Mark Cd5-Cd19 PID/ Samter's syndrome, A1A, GERD Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 24, 1999 Report Share Posted May 24, 1999 Dear , It all depends on what Zach's diagnosis is. Certainly, the regular pneummovax could be given to test for response and if there was no response (remember, these must be 0's) to 12 of the pre and post ititers, a Cd5 test should be done. The conjugated version was given as this PID is still not completely understood. What were Zach's results to the pneummovax and HIB? If anyone is ever considering getting the Cd5 test done...make sure that you have your physician contact Dr. Hostoffer via the consulting immunologist program at the IDF...there is a specific way the test has to be done and interpreted. A. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 24, 1999 Report Share Posted May 24, 1999 Hi , Just wanted to add my two cents worth to this discussion on the conjugated vaccine, it is my understanding that this vaccine is under trials. I also have heard of some drs using it for kids who don't response well to the regular pneumovax. I would imagine that in the near future they will suggest that we try this vaccine on Kinsey, as she doesn't respond well to polysacchride bacterias. It would seem that this might help some children. I guess only time and the trials will tell. Hope this helps!! Gail Kinsey - CVID IDF Volunteer Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 24, 1999 Report Share Posted May 24, 1999 Autumn, Thanks for the explanation. So since Zach's not Cd5, we don't need this. Am I right? Wife to Tom, Mom to 6 yr Zach, ???(don't know the specific type) PID, GERD, chronic sinusitis, IVIG, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 24, 1999 Report Share Posted May 24, 1999 Autumn, I have somehow misplaced my copy of Zach's results. I'll call the immuno. & have her office fax them to me again. But as I recall, he had no response to only 7 or 8 and poor response to the rest, but don't quote me on it. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 25, 1999 Report Share Posted May 25, 1999 Gail... You are correct, at least that is how the vaccine was explained to me. ) Autumn mom to Mark Cd5-Cd19 PID/ Samter's syndrome, A1A, GERD Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 31, 1999 Report Share Posted May 31, 1999 Ursula: Tyler is exempt from all immunizations. He had the pneumovax and didn't make any antibodies to it at all (5times). His immunologist said he wanted to still give them to him but what's the point? I'm not going to run the risk of allergic reaction or worse for something I don't think will help him, and his ped. agrees. I sure wish I could find a good immunologist, I'm tired of firing this one! Sheble(Tyler's mom) Ursula Holleman wrote: > > > Macey has been exempted from all future vaccinations. she did have the > Injectable polio before diagnosis though. Do others have a release from > immunizations or does it depend on what the immunization is? > > Ursula Holleman > Macey's mom (4 yr. old with CVID, asthma, GERD, sinus disease, grade I > left kidney reflux, Sensory Integration Disorder) > ICQ # 28592349 > http://www.icq.com > > PedPID email list archives > http://www.netpage.org/PedPID/_PedPID/ > > PedPID email list introductions > http://www.netpage.org/PedPID/_PedPID/introduction.htm > > > > ------------------------------------------------------------------------ > How many communities do you think join ONElist each day? > http://www.onelist.com > More than 1,000! Create yours now! > ------------------------------------------------------------------------ > 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...
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.