Guest guest Posted May 31, 1999 Report Share Posted May 31, 1999 : I understand what you are saying about " some protection is better than none " . But did you have reactions to the immunizations? My son had terrible reactions to his first set of shots before diagnosis. High fever, vomiting, and his wbc went up to 64,000. I'm not willing to do that to him because I know something bad will happen. As you can tell I'm not too trusting of docs. (sorry) Tyler had RAST testing done when he was a baby and again last month. His allergies have only gotten worse- especially to eggs. I was told that FDA was in the process of approving a flu vaccine for people allergic to eggs that is used as a nasal spray. I don't disagree with what you are saying, but when you hear so many different things from different docs who are supposed to know what they're talking about-kinda makes you wonder-after all this is MY son. wrote: > > > Annette, > > >From our immunology and microbiology lectures on immunization, it sounds > like they are still working on the pneumovax with the protein > conjugation. This is because there are about 24 strains of pneumococcus > that cause various problems, whereas the strains of HIB that cause > problems are many fewer. So it will probably take a bit longer to > figure out how to get it all into one vaccine and still hook it to the > protein. That was a few months ago, though, so I'm sure NJC will know > if it's out yet. > > It's soooo interesting that they can do it that way. The key is that > the B-cells process the HIB, pneumovax and meningococcus germs, whereas > the T-cells are needed for everything else. When you hook it to a > protein, it makes the T-cells respond to the germs listed above, and > when you get the T-cells involved, you get a much longer lasting effect, > particularly in someone with a B-cell defect. > > Okay, now here's my soapbox... I apologize in advance for the force of > my statements, but I'm really distressed by what I've heard a lot of > people with PIDs of parents of kids with PIDs say: > > To those who have said their kids are absolved of future immunizations, > I'd question your doctors carefully. For right now, I'd say yeah, the > pneumovax is probably a waste of time. But for diphtheria, tetanus, > hepatitis, killed polio, the flu, etc, these are all killed vaccines, > which are mainly processed by the T-cells. This means that most people > with CVID will be able to make some response to them. Even if they have > a low level of protection, that's better than no protection at all. > When your body first tries to fight an infection, if it's never made > antibodies to something, it takes 1-2 weeks of non-specific immune > response before it can fight the germ with specific and powerful > antibodies, and in those two weeks a lot of people can die, especially > people whose immune systems don't function properly. When I was first > diagnosed, I also believed that I wouldn't get any more vaccines, > because I thought it was a waste of time and money. But since then (and > since taking an immunology course at one of the top immunology research > medical centers in the country this spring), I've decided I will have my > levels monitored, and I will get as many vaccines as often as it takes > to maintain my levels in the protective range (some of these things > we'll be protected against by using IVIG, so some of them may not take > more frequent vaccines, but I'll have my levels of everything checked > regularly for a while, until I know what I need and what I don't need). > If it means I have to get my tetanus every year, instead of every 10 > years, I'll do it, because I'd rather get a shot once a year than get > the illness or worry anytime I get cut. Lockjaw isn't pretty. And I > have a pretty significant T-cell functional and numeric deficit, but > even *my* T-cells work well enough to get some protection for me on most > of these immunizations, so please don't use that as an excuse. Please > make sure your doctor can explain to you IN DETAIL why they are > recommending that you not get the immunization. Many doctors who've > been out of med school for a while (this is bad to say, but it's very > true) never took an immunology course, because what they know now wasn't > known when they were in med school. So many doctors don't understand > things like the fact that you can conjugate certain bacteria to > proteins, trick the T-cells into responding, and make it work. Many > doctors don't even know whether the T-cells or B-cells respond to which > germ. And many doctors hear " immune deficiency " and say (as a knee-jerk > response), " oh, then you shouldn't bother. " But PRESS YOUR IMMUNOLOGIST > to explain to you in detail. I am not trying to sound rude, but here's > the fact of it: only one specialty requires doctors to take a > board-certifying exam after the first time they pass. All other > specialties, when you finish your training and take your qualifying > exam, that's it... you never again have to prove that you know your > specialty... I think you just have to turn in a certain number of > continuing education hours each year. This year, we had the two > immunology fellows in our 1st year med school class with us - Why? > Because the field has changed SO much since they were in 1st year med > school (only 7 years ago), they couldn't have passed their exam without > re-taking the class this year. But what does this say about all the > allergy/immunology docs out there who passed their boards 15, 20, or > more years ago? Especially those who specialize in allergy? It means > (to me, interpret as you want, and tell me to jump in a lake if you'd > like) that unless they have made a concerted effort to keep up with all > the research about the immune system that has come out in the last 15 > years (which is IMMENSE), they may not know how these vaccines work, > either! I can send you a long and detailed response to present to them, > which I wrote for another group, if you'd like my explanation on how all > these things work and why PID patients need to keep up with their > vaccinations, but I won't subject the whole group to it unless you're > interested. If you think your doctor doesn't know what he/she is > talking about with regard to immunizations, challenge them, because you > may find out that they don't know as much as you (or they) think. But > my opinion is that as people with PID's, we are actually the ones who > need the immunizations the worst. The fact is, unless you are allergic > to eggs, the flu shot ISN'T GOING TO HURT YOU - it is a KILLED virus, > which unlike live attenuated polio, BCG (not given in the US) or the > MMR, cannot EVER come back to life and cause the infection itself in the > body of an immune compromised person. And some protection is certainly > better than no protection, especially when you can't count on your > immune system to do the non-specific work it's supposed to in the first > few weeks of containing an infection. So the immunization isn't going > to kill you, but the illness itself certainly could. > > Sorry to be so adamant, but I feel that patients are not being told the > whole story, and they are being fed misinformation from doctors who do > not understand the details of how the immune system works. My apologies > if I offend anyone, but I would hate to see anyone get sick, because of > something that could have been prevented. > > Take care, > > > ------------------------------------------------------------------------ > It's finally here! What's your opinion? > http://www.onelist.com > Create a Star Wars discussion group 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. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 1, 1999 Report Share Posted June 1, 1999 Dear : Did you ever call Dr. Manning? He is the best in the phoenix area. We have had no complaints so far about him. We are still waiting to hear about the new pneumovax as our daughter has no titers in her blood for any pneumonia. Take care annette mom to cvid,asthmatic > >Reply-To: PedPIDonelist >To: PedPIDonelist >Subject: Re: immunizations >Date: Mon, 31 May 1999 23:53:28 +0000 > > > >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. > > > > >------------------------------------------------------------------------ >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. _______________________________________________________________ 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 June 1, 1999 Report Share Posted June 1, 1999 Dear Kim: Thanks for all the information I have a call into our immunologist about the pneumovax. My daughter will continue to get all the vaccines she needs that come from the dead viruses or bacteria. I also feel that a little coverage is better than none at all. Don't most immunologists and allergist go to update seminars and continuous ed classes? My own brother must sit a board every two years to keep his rating as a trauma and er specialist. I think all medical personel should have to go to continuing ed classes. Just a thought. Take care and all of the parents that children will be having their IVIG treatment this week I hope it goes smoothly without any side effects. Ours is on thursday. thanks for writing back Kim, thank again, annette mom to cvid,asthmatic > >Reply-To: PedPIDonelist >To: PedPIDonelist >Subject: Re: immunizations >Date: Tue, 01 Jun 1999 00:15:27 +0000 > > > >: > >I understand what you are saying about " some protection is better than >none " . >But did you have reactions to the immunizations? My son had terrible >reactions >to his first set of shots before diagnosis. High fever, vomiting, and his >wbc went >up to 64,000. I'm not willing to do that to him because I know something >bad will >happen. As you can tell I'm not too trusting of docs. (sorry) Tyler had >RAST testing >done when he was a baby and again last month. His allergies have only >gotten worse- >especially to eggs. I was told that FDA was in the process of approving a >flu vaccine >for people allergic to eggs that is used as a nasal spray. I don't disagree >with what you >are saying, but when you hear so many different things from different docs >who are supposed >to know what they're talking about-kinda makes you wonder-after all this is >MY son. > > wrote: > > > > > > > Annette, > > > > >From our immunology and microbiology lectures on immunization, it >sounds > > like they are still working on the pneumovax with the protein > > conjugation. This is because there are about 24 strains of pneumococcus > > that cause various problems, whereas the strains of HIB that cause > > problems are many fewer. So it will probably take a bit longer to > > figure out how to get it all into one vaccine and still hook it to the > > protein. That was a few months ago, though, so I'm sure NJC will know > > if it's out yet. > > > > It's soooo interesting that they can do it that way. The key is that > > the B-cells process the HIB, pneumovax and meningococcus germs, whereas > > the T-cells are needed for everything else. When you hook it to a > > protein, it makes the T-cells respond to the germs listed above, and > > when you get the T-cells involved, you get a much longer lasting effect, > > particularly in someone with a B-cell defect. > > > > Okay, now here's my soapbox... I apologize in advance for the force of > > my statements, but I'm really distressed by what I've heard a lot of > > people with PIDs of parents of kids with PIDs say: > > > > To those who have said their kids are absolved of future immunizations, > > I'd question your doctors carefully. For right now, I'd say yeah, the > > pneumovax is probably a waste of time. But for diphtheria, tetanus, > > hepatitis, killed polio, the flu, etc, these are all killed vaccines, > > which are mainly processed by the T-cells. This means that most people > > with CVID will be able to make some response to them. Even if they have > > a low level of protection, that's better than no protection at all. > > When your body first tries to fight an infection, if it's never made > > antibodies to something, it takes 1-2 weeks of non-specific immune > > response before it can fight the germ with specific and powerful > > antibodies, and in those two weeks a lot of people can die, especially > > people whose immune systems don't function properly. When I was first > > diagnosed, I also believed that I wouldn't get any more vaccines, > > because I thought it was a waste of time and money. But since then (and > > since taking an immunology course at one of the top immunology research > > medical centers in the country this spring), I've decided I will have my > > levels monitored, and I will get as many vaccines as often as it takes > > to maintain my levels in the protective range (some of these things > > we'll be protected against by using IVIG, so some of them may not take > > more frequent vaccines, but I'll have my levels of everything checked > > regularly for a while, until I know what I need and what I don't need). > > If it means I have to get my tetanus every year, instead of every 10 > > years, I'll do it, because I'd rather get a shot once a year than get > > the illness or worry anytime I get cut. Lockjaw isn't pretty. And I > > have a pretty significant T-cell functional and numeric deficit, but > > even *my* T-cells work well enough to get some protection for me on most > > of these immunizations, so please don't use that as an excuse. Please > > make sure your doctor can explain to you IN DETAIL why they are > > recommending that you not get the immunization. Many doctors who've > > been out of med school for a while (this is bad to say, but it's very > > true) never took an immunology course, because what they know now wasn't > > known when they were in med school. So many doctors don't understand > > things like the fact that you can conjugate certain bacteria to > > proteins, trick the T-cells into responding, and make it work. Many > > doctors don't even know whether the T-cells or B-cells respond to which > > germ. And many doctors hear " immune deficiency " and say (as a knee-jerk > > response), " oh, then you shouldn't bother. " But PRESS YOUR IMMUNOLOGIST > > to explain to you in detail. I am not trying to sound rude, but here's > > the fact of it: only one specialty requires doctors to take a > > board-certifying exam after the first time they pass. All other > > specialties, when you finish your training and take your qualifying > > exam, that's it... you never again have to prove that you know your > > specialty... I think you just have to turn in a certain number of > > continuing education hours each year. This year, we had the two > > immunology fellows in our 1st year med school class with us - Why? > > Because the field has changed SO much since they were in 1st year med > > school (only 7 years ago), they couldn't have passed their exam without > > re-taking the class this year. But what does this say about all the > > allergy/immunology docs out there who passed their boards 15, 20, or > > more years ago? Especially those who specialize in allergy? It means > > (to me, interpret as you want, and tell me to jump in a lake if you'd > > like) that unless they have made a concerted effort to keep up with all > > the research about the immune system that has come out in the last 15 > > years (which is IMMENSE), they may not know how these vaccines work, > > either! I can send you a long and detailed response to present to them, > > which I wrote for another group, if you'd like my explanation on how all > > these things work and why PID patients need to keep up with their > > vaccinations, but I won't subject the whole group to it unless you're > > interested. If you think your doctor doesn't know what he/she is > > talking about with regard to immunizations, challenge them, because you > > may find out that they don't know as much as you (or they) think. But > > my opinion is that as people with PID's, we are actually the ones who > > need the immunizations the worst. The fact is, unless you are allergic > > to eggs, the flu shot ISN'T GOING TO HURT YOU - it is a KILLED virus, > > which unlike live attenuated polio, BCG (not given in the US) or the > > MMR, cannot EVER come back to life and cause the infection itself in the > > body of an immune compromised person. And some protection is certainly > > better than no protection, especially when you can't count on your > > immune system to do the non-specific work it's supposed to in the first > > few weeks of containing an infection. So the immunization isn't going > > to kill you, but the illness itself certainly could. > > > > Sorry to be so adamant, but I feel that patients are not being told the > > whole story, and they are being fed misinformation from doctors who do > > not understand the details of how the immune system works. My apologies > > if I offend anyone, but I would hate to see anyone get sick, because of > > something that could have been prevented. > > > > Take care, > > > > > > ------------------------------------------------------------------------ > > It's finally here! What's your opinion? > > http://www.onelist.com > > Create a Star Wars discussion group 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. > > > > >------------------------------------------------------------------------ >ONElist: the best source for group communications. >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 June 2, 1999 Report Share Posted June 2, 1999 (Tyler's mom) Have you seen the Cd5-Cd19 web-page describing that PID. If not and Tyler has -0- response to all the titers to the pneummovax you should take a look at it. 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...
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