Guest guest Posted January 6, 2006 Report Share Posted January 6, 2006 Can you all tell me how many serotypes you should respond to from the prevnar vaccine to be considered normal and abnormal. My son had 4 responses out of the 12 serotypes tested, his immunologist at home said he has a antibody deficiency. We are at Cincinnati CHildren's having a workup for his multiple issues(severe osteoporosis, GI problems, severe worsening asthma, sinus polyps), the immunologist here said they consider any response to vaccines normal. Even just 1 serotype response. They said 1 response only they may want more testing, but 2 or more responses is normal. Our immunologist at home said they want 6 at least(which they consider borderline function) and anything less is a deficiency. This immunologist here in Cincy is saying he could have cystic fibrosis, and wants tests to that, which the drs at home do not think is likely. All is differing opinions is crazy!! Would appreciate knowing what you all have been told is the number of responses you need to have adequate vaccine response. Also is pneumovax better than prevnar? Thanks. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 6, 2006 Report Share Posted January 6, 2006 , We used to go to Cinci children's back when Dr. Lochelt was there and my kids had response to 3 and he said they had a deficiency. They like to test for CF there as we went through that there too. We didn't get our last 2 sets of vaccine response back because both times they lost the kids blood! Both kids, both times! Anyway, I think you get alot of variance depending on who you see. I am not sure what the standard is for response to be considered normal. It also depends on if they maintain the antibodies or not. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 6, 2006 Report Share Posted January 6, 2006 smoot732000 wrote: This immunologist here in Cincy is saying he could have > cystic fibrosis, and wants tests to that, , I have no idea what the answer to your question is about how much is enough response. But, I want to assure you that most of our kids have been tested for CF just to rule it out. So don't let that one throw you. I've found that you can get different answers from different doctors in the same teaching hospital -- so, wait and see what all this one has to say, then if it doesn't sound right -- ask IDF or this group for a recommendation to another immunologist to check it out until you feel secure with the answer. Since there is not a standard of care yet, you get a wide variation depending on everyone's pet theory. Trouble is -- that pet theory can hurt a kid's chances for a normal life. But, I would suggest that you let them check things out thoroughly before deciding to go elsewhere. Some of my early changing doctors turned out to be unnecessary. They were right in the first place!!! (At least one of them was anyway!) I just had to get to the point of being willing to hear what I didn't want to hear. Hope that helps and best wishes for a " real " diagnosis soon. In His service, Dale Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 6, 2006 Report Share Posted January 6, 2006 and Dale, Thank you both for your responses. I guess it does vary dr to dr. After I posted this question I looked up on the american academy of allergy asthma & immunology website and found a section on practice parameters for immunodeficiency, and found it said they consider a protective antibody response in a child 2-5 to be 50% of the serotypes tested, and for ages 5 and older a protective response is 70% of the serotypes tested. So from their parameters it would appear that our immunologist at home is more in line with what the recomendations of the national physicans associations are. We love our immunologist at home. He has gone way beyond what the average dr would do. He is just at a loss with my daughter who has the systemic eosinophilic disease. That is why he has sent us here. Our son has symptoms so he wanted him evaluated also. Unfortunately, Cincinnati is now at a loss too, as they admit they have not had a case like hers, although they do treat many patinets with eosinophilic disease. So anyway, we are in good hands at home, and will rely on him for treatment. Even though he sends us to these top drs, he is well known himself, and not afraid to disagree with these drs in Cincy if he thinks they are wrong about something. Dale I just wanted to let you know I love the way you sign as you are in " His " service. Thanks again > This immunologist here in Cincy is saying he could have > > cystic fibrosis, and wants tests to that, > > , I have no idea what the answer to your question is about how much > is enough response. But, I want to assure you that most of our kids > have been tested for CF just to rule it out. So don't let that one > throw you. > > I've found that you can get different answers from different doctors in > the same teaching hospital -- so, wait and see what all this one has to > say, then if it doesn't sound right -- ask IDF or this group for a > recommendation to another immunologist to check it out until you feel > secure with the answer. Since there is not a standard of care yet, you > get a wide variation depending on everyone's pet theory. Trouble is -- > that pet theory can hurt a kid's chances for a normal life. But, I > would suggest that you let them check things out thoroughly before > deciding to go elsewhere. Some of my early changing doctors turned out > to be unnecessary. They were right in the first place!!! (At least one > of them was anyway!) I just had to get to the point of being willing to > hear what I didn't want to hear. > > Hope that helps and best wishes for a " real " diagnosis soon. > > In His service, > Dale > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 7, 2006 Report Share Posted January 7, 2006 > > This immunologist here in Cincy is saying he could have > > > cystic fibrosis, and wants tests to that, > > > > , I have no idea what the answer to your question is about how > much > > is enough response. But, I want to assure you that most of our > kids > > have been tested for CF just to rule it out. So don't let that one > > throw you. > > > > I've found that you can get different answers from different > doctors in > > the same teaching hospital -- so, wait and see what all this one > has to > > say, then if it doesn't sound right -- ask IDF or this group for a > > recommendation to another immunologist to check it out until you > feel > > secure with the answer. Since there is not a standard of care yet, > you > > get a wide variation depending on everyone's pet theory. Trouble > is -- > > that pet theory can hurt a kid's chances for a normal life. But, I > > would suggest that you let them check things out thoroughly before > > deciding to go elsewhere. Some of my early changing doctors turned > out > > to be unnecessary. They were right in the first place!!! (At > least one > > of them was anyway!) I just had to get to the point of being > willing to > > hear what I didn't want to hear. > > > > Hope that helps and best wishes for a " real " diagnosis soon. > > > > In His service, > > Dale > > > > > > > > > > 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. > > To unsubscribe -unsubscribegroups (DOT) > To search group archives go to: > /messages > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 7, 2006 Report Share Posted January 7, 2006 , Thanks for letting me know your experience with the immunologists here. I would love to e-mail you later as well. We are here in Ohio still and have more tests Monday, so we are about to leave for a little weekend getaway until we have to go back to the hospital. If it is OK I will e-mail you early next week. Thanks again, It seems the opinion here is way off base for immune deficencies. They are so well known, and do have much experience with rare diseases, so it throws me off to hear them say this. Glad to know we were not the only ones. Take care. > > This immunologist here in Cincy is saying he could have > > > cystic fibrosis, and wants tests to that, > > > > , I have no idea what the answer to your question is about how > much > > is enough response. But, I want to assure you that most of our > kids > > have been tested for CF just to rule it out. So don't let that one > > throw you. > > > > I've found that you can get different answers from different > doctors in > > the same teaching hospital -- so, wait and see what all this one > has to > > say, then if it doesn't sound right -- ask IDF or this group for a > > recommendation to another immunologist to check it out until you > feel > > secure with the answer. Since there is not a standard of care yet, > you > > get a wide variation depending on everyone's pet theory. Trouble > is -- > > that pet theory can hurt a kid's chances for a normal life. But, I > > would suggest that you let them check things out thoroughly before > > deciding to go elsewhere. Some of my early changing doctors turned > out > > to be unnecessary. They were right in the first place!!! (At > least one > > of them was anyway!) I just had to get to the point of being > willing to > > hear what I didn't want to hear. > > > > Hope that helps and best wishes for a " real " diagnosis soon. > > > > In His service, > > Dale > > > > > > > > > > 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. > > To unsubscribe -unsubscribegroups (DOT) > To search group archives go to: > /messages > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 7, 2006 Report Share Posted January 7, 2006 In a message dated 1/6/2006 4:26:29 PM Pacific Standard Time, smoot732000@... writes: Would appreciate knowing what you all have been told is the number of responses you need to have adequate vaccine response. Also is pneumovax better than prevnar? Thanks. _________________________________________________________________________ Hi , My son only responded to two at an adequate level. Our Immunologist also went by 's clinical picture which was not good at the time. He had chronic ear, sinus and strep infections. At least one or two of these in combination about every two to three weeks. He is now being treated with IVIG and his quality of life has improved dramatically. He still gets sinus infections--but not very often. The strep and ear infections are gone. Hang in there!! Sandi, mom to , age 12, CVID Quote Link to comment Share on other sites More sharing options...
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