Guest guest Posted April 11, 2001 Report Share Posted April 11, 2001 - my take on all the information listed is that these are criteria for Immunocompetent children and that doesn't apply to our Pumpkins. All that stuff flies out the window when it comes to the fact that these kids can't build an antibody response to this vaccination so any risk of antibodies mounting on top of antibodies is nill. I've stopped reading the inserts on most of Macey's medicines (now don't take that literally because you know I skim over everything that goes into this cutie pie) and take it all in with a grain of salt. 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 April 11, 2001 Report Share Posted April 11, 2001 - my take on all the information listed is that these are criteria for Immunocompetent children and that doesn't apply to our Pumpkins. All that stuff flies out the window when it comes to the fact that these kids can't build an antibody response to this vaccination so any risk of antibodies mounting on top of antibodies is nill. I've stopped reading the inserts on most of Macey's medicines (now don't take that literally because you know I skim over everything that goes into this cutie pie) and take it all in with a grain of salt. 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 April 11, 2001 Report Share Posted April 11, 2001 had the PPV and ph had the Prevnar-- had the PPV to test his antibody reaction to it. He had very little. Somewhere I have info on it--if I find it I will send it to the list. I also have the Prevnar insert and it is scary, too... they are all scary, aren't they? -- ~Pattie~ " a person's a person, no matter how small " ~~ Dr. Seuss Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 11, 2001 Report Share Posted April 11, 2001 had the PPV and ph had the Prevnar-- had the PPV to test his antibody reaction to it. He had very little. Somewhere I have info on it--if I find it I will send it to the list. I also have the Prevnar insert and it is scary, too... they are all scary, aren't they? -- ~Pattie~ " a person's a person, no matter how small " ~~ Dr. Seuss Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 11, 2001 Report Share Posted April 11, 2001 had the PPV and ph had the Prevnar-- had the PPV to test his antibody reaction to it. He had very little. Somewhere I have info on it--if I find it I will send it to the list. I also have the Prevnar insert and it is scary, too... they are all scary, aren't they? -- ~Pattie~ " a person's a person, no matter how small " ~~ Dr. Seuss Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 11, 2001 Report Share Posted April 11, 2001 , Thank you for this information! I'm glad to know all of this. We haven't had good experiences with the pneumovax and I was really against ever trying it again. Thank you for sharing this. , mother of Chad, age 9, " Hypo " , GERD, Asthma/Bronchitis, " Allergy King " , Scoliosis, ??IGA Nephropathy, Anemia Re: Digest Number 884 > > > > , > > Thank you. Are Chad's wounds (little abrasions from playing) slow to > heal? > > 's often are. I don't know if she could be anemic. I think I will > call the > > Ped. tomorrow and ask if she thinks the bruising warrants a check-up or > > blood work. It just keeps worrying me and she is being more active now > > with the warmer weather. The bruises are either small or medium, no huge > > ones. I found on the internet about bruising a side-effect of steriod use > (oral)but > > not listed under corticosteriods, inhaled. She also has several broken > capillaries > > on her little face. She is very petite. She took allergy shots for 5 > years and > > they started helping in a few months from the start date. She stopped > getting > > frequent ear infections and also stopped the frequent really runny nose > from > > allergies. She tested allergic to most of the pollens and animals and > molds. > > The doctor decided to limit her treatment to the trees and grasses she > would > > be exposed to more here because there were too many he said to put in the > > shot. He said we really needed to commit to 5 years and the frequency of > > shots went down over the years. Her arms were so small at first they had > to > > divide the dose between both arms(age 3, but really small and tiny) and > she > > was so brave every time for the 1st shot, but cried for the 2nd arm. As > soon > > as possible she went to one shot. The allergist/immunologist required we > > wait 30 min. before leaving the Ped. after the shot. never had a > systemic reaction, usually got a big or small hive at the shot site though. > > Their arms would be sore. She sometimes needed Benadryl or used Claritin > > if already taking it that day. Often, she did fine and didn't need any > med. > > The Allergist was very strict about the Ped. checking the Peak flow before > > and after the shots and not giving shots during an asthma flare. My son > who > > has CVID also took shots and had some mild systemic reactions where he > > got asthma symptons/coughing after the shot--just sometimes--but it scared > > me. We learned to premedicate him with Benadryl and watch the allergy > > mold count on shot days. He started getting large hives at the site and a > very > > sore arm once he was on maintance and getting shots every 2 weeks or > > maybe it was at 3 weeks apart. He did better on the once a week shots. I > was > > glad when it was over for him. did fine. She is much improved. > Still has > > problems during early fall, we think it is the ragweed. > > Jan, mom to Ben age 13 and age 9 > > > > > > > > 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 April 11, 2001 Report Share Posted April 11, 2001 , Thank you for this information! I'm glad to know all of this. We haven't had good experiences with the pneumovax and I was really against ever trying it again. Thank you for sharing this. , mother of Chad, age 9, " Hypo " , GERD, Asthma/Bronchitis, " Allergy King " , Scoliosis, ??IGA Nephropathy, Anemia Re: Digest Number 884 > > > > , > > Thank you. Are Chad's wounds (little abrasions from playing) slow to > heal? > > 's often are. I don't know if she could be anemic. I think I will > call the > > Ped. tomorrow and ask if she thinks the bruising warrants a check-up or > > blood work. It just keeps worrying me and she is being more active now > > with the warmer weather. The bruises are either small or medium, no huge > > ones. I found on the internet about bruising a side-effect of steriod use > (oral)but > > not listed under corticosteriods, inhaled. She also has several broken > capillaries > > on her little face. She is very petite. She took allergy shots for 5 > years and > > they started helping in a few months from the start date. She stopped > getting > > frequent ear infections and also stopped the frequent really runny nose > from > > allergies. She tested allergic to most of the pollens and animals and > molds. > > The doctor decided to limit her treatment to the trees and grasses she > would > > be exposed to more here because there were too many he said to put in the > > shot. He said we really needed to commit to 5 years and the frequency of > > shots went down over the years. Her arms were so small at first they had > to > > divide the dose between both arms(age 3, but really small and tiny) and > she > > was so brave every time for the 1st shot, but cried for the 2nd arm. As > soon > > as possible she went to one shot. The allergist/immunologist required we > > wait 30 min. before leaving the Ped. after the shot. never had a > systemic reaction, usually got a big or small hive at the shot site though. > > Their arms would be sore. She sometimes needed Benadryl or used Claritin > > if already taking it that day. Often, she did fine and didn't need any > med. > > The Allergist was very strict about the Ped. checking the Peak flow before > > and after the shots and not giving shots during an asthma flare. My son > who > > has CVID also took shots and had some mild systemic reactions where he > > got asthma symptons/coughing after the shot--just sometimes--but it scared > > me. We learned to premedicate him with Benadryl and watch the allergy > > mold count on shot days. He started getting large hives at the site and a > very > > sore arm once he was on maintance and getting shots every 2 weeks or > > maybe it was at 3 weeks apart. He did better on the once a week shots. I > was > > glad when it was over for him. did fine. She is much improved. > Still has > > problems during early fall, we think it is the ragweed. > > Jan, mom to Ben age 13 and age 9 > > > > > > > > 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 April 11, 2001 Report Share Posted April 11, 2001 , Thank you for this information! I'm glad to know all of this. We haven't had good experiences with the pneumovax and I was really against ever trying it again. Thank you for sharing this. , mother of Chad, age 9, " Hypo " , GERD, Asthma/Bronchitis, " Allergy King " , Scoliosis, ??IGA Nephropathy, Anemia Re: Digest Number 884 > > > > , > > Thank you. Are Chad's wounds (little abrasions from playing) slow to > heal? > > 's often are. I don't know if she could be anemic. I think I will > call the > > Ped. tomorrow and ask if she thinks the bruising warrants a check-up or > > blood work. It just keeps worrying me and she is being more active now > > with the warmer weather. The bruises are either small or medium, no huge > > ones. I found on the internet about bruising a side-effect of steriod use > (oral)but > > not listed under corticosteriods, inhaled. She also has several broken > capillaries > > on her little face. She is very petite. She took allergy shots for 5 > years and > > they started helping in a few months from the start date. She stopped > getting > > frequent ear infections and also stopped the frequent really runny nose > from > > allergies. She tested allergic to most of the pollens and animals and > molds. > > The doctor decided to limit her treatment to the trees and grasses she > would > > be exposed to more here because there were too many he said to put in the > > shot. He said we really needed to commit to 5 years and the frequency of > > shots went down over the years. Her arms were so small at first they had > to > > divide the dose between both arms(age 3, but really small and tiny) and > she > > was so brave every time for the 1st shot, but cried for the 2nd arm. As > soon > > as possible she went to one shot. The allergist/immunologist required we > > wait 30 min. before leaving the Ped. after the shot. never had a > systemic reaction, usually got a big or small hive at the shot site though. > > Their arms would be sore. She sometimes needed Benadryl or used Claritin > > if already taking it that day. Often, she did fine and didn't need any > med. > > The Allergist was very strict about the Ped. checking the Peak flow before > > and after the shots and not giving shots during an asthma flare. My son > who > > has CVID also took shots and had some mild systemic reactions where he > > got asthma symptons/coughing after the shot--just sometimes--but it scared > > me. We learned to premedicate him with Benadryl and watch the allergy > > mold count on shot days. He started getting large hives at the site and a > very > > sore arm once he was on maintance and getting shots every 2 weeks or > > maybe it was at 3 weeks apart. He did better on the once a week shots. I > was > > glad when it was over for him. did fine. She is much improved. > Still has > > problems during early fall, we think it is the ragweed. > > Jan, mom to Ben age 13 and age 9 > > > > > > > > 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 April 12, 2001 Report Share Posted April 12, 2001 I had been warned by s immnuo to expect to become quite ill in reaction to the pneumovax, but he hasnt seemed to have any trouble with it. It was done on Monday,( dr thought it best not to wait any longer) and I could not say that he has become any worse than he already is with the chest infection and tonsilitis. I was told lastnight his throat was looking much better, and his chest is sounding clearer to some extent. No raging fevers. Temp only slightly elevated on occasion.He continues to mouth, his nose has him very distressed, still not eating, looks dreadful and very pale, ab pain continues, as does the exteme lethargy. He is still on the Augmentin. How common are bad reactions to the pneumovax??? Re: Pneumovax > had a high fever for several days after he received the PPV > (pneumonvax). I know you didn't ask me, but I thought I'd share:0) AND > I have to say that ph never got the prevnar! He WAS scheduled to > have it several times.. but he never got it-- WHAT was I thinking??? > Somewhere in there with 2 sick kids I forgot he never got it-- he is > supposed to get it! ARRRGH... is supposed to get the Prevnar 2 > years AFTER the PPV-- I looked up the reasons, but forget them at the > moment. > > Also-the Prevnar insert says that the PPV works about the same... I have > to find that darn inseretr so I can type it in word for word. I was > wondering why I would get ph the new Prevnar when the PPV works the > same-- I'll try to find it today and send out the info > > -- > ~Pattie~ > " a person's a person, no matter how small " ~~ Dr. Seuss > > > > 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 April 12, 2001 Report Share Posted April 12, 2001 I had been warned by s immnuo to expect to become quite ill in reaction to the pneumovax, but he hasnt seemed to have any trouble with it. It was done on Monday,( dr thought it best not to wait any longer) and I could not say that he has become any worse than he already is with the chest infection and tonsilitis. I was told lastnight his throat was looking much better, and his chest is sounding clearer to some extent. No raging fevers. Temp only slightly elevated on occasion.He continues to mouth, his nose has him very distressed, still not eating, looks dreadful and very pale, ab pain continues, as does the exteme lethargy. He is still on the Augmentin. How common are bad reactions to the pneumovax??? Re: Pneumovax > had a high fever for several days after he received the PPV > (pneumonvax). I know you didn't ask me, but I thought I'd share:0) AND > I have to say that ph never got the prevnar! He WAS scheduled to > have it several times.. but he never got it-- WHAT was I thinking??? > Somewhere in there with 2 sick kids I forgot he never got it-- he is > supposed to get it! ARRRGH... is supposed to get the Prevnar 2 > years AFTER the PPV-- I looked up the reasons, but forget them at the > moment. > > Also-the Prevnar insert says that the PPV works about the same... I have > to find that darn inseretr so I can type it in word for word. I was > wondering why I would get ph the new Prevnar when the PPV works the > same-- I'll try to find it today and send out the info > > -- > ~Pattie~ > " a person's a person, no matter how small " ~~ Dr. Seuss > > > > 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 April 12, 2001 Report Share Posted April 12, 2001 , Chad's former ped and an immunologist he pulled into the picture gave the pneumovax with a DT shot while he had strep in his system. He was hospitalized 5 days and nights and taken into an unneccesary emergency surgery. They both blamed it on the pneumovax, called it a very weird and unusual reaction....I blamed it on the strep. But before this incident, the same immunologist gave the pneumovax three times. Chad got really sick with upper respiratory infection and bronchitis twice. They had him off IVIG to do this, so I can't say if it was the pneumovax (more than likely it wasn't) but I just got a really bad attitude about pneumovax because of all this. Especially because the immunologist lost the blood 3 times trying to complete the process. We never got any results because of all this. I have no idea if Chad makes antibodies to it or not. The one time that the immunologist did manage to do it without losing the blood, he just called us by phone and said, " stay on IVIG " ....nothing further, no explanation. And the old ped said when Chad wound up hospitalized, that they'd never give him pneumovax again. When I joined the group and saw what everyone has been saying about the pneumoccal testing, it made we wonder if we really need to try this again, but I just have really bad feelings about it. I've read some posts where it's being done to determine the extent of the deficiency or to get a diagnosis and then there are others who are already diagnosed and still being tested with pneumovax. Is this to determine whether or not to use IVIG? To be honest, I've really been confused about this. With Chad, they were trying to test to see if he could benefit from pneumovax because of his ongoing infections. Our current immunologist has only done the diptheria and tetanus antibody titers, the immunoglobulins and IGG subclasses and said he needed no further proof. He hasn't mentioned the pneumovax to us yet. If he does, I'll ask if he wants to do it to see if the vaccine might benefit Chad, because he doesn't need it for diagnostic reasons. He's taking the " first things first " approach and it's much easier when you're in a bad road to do the D and T titers. He actually was going to put Chad back on IVIG without even doing them because of the clinical symptoms and the immunoglobulin counts that we took up with us. He was Chad's immunologist during his first three years, so he knew where we started and how much farther we should be by now. I think I've said this here before, but the old ped thinks that you do NOT get IVIG unless your counts are extremely critical. Chad's always have been up until he was 7. They're still low, but like I said, that's the thinking of the ped and this was when the shortage was going on with IVIG. So unless they thought you were about to die, you didn't get it, was his reasoning. He said it should be reserved for cases that are almost at the point of BMT and since Chad was better than his former years, he didn't need it anymore. He also tried to tell us that the reactions Chad had to IVIG was because he didn't need it. I found the immune deficiency foundation website within the past two years because I didn't believe him. (Even Chad's IVIG nurses told me that was hogwash about the reactions because I asked them about what the ped said). When I got on the IDF site, I saw all these adults and children who had reactions to IVIG, whose counts were higher than Chad's, infections were being better controlled and I got MAD! No more old ped, lol, and hopefully a much better Chad soon. Thanks for listening and I apologize for this being so long. Re: Digest Number 884 > > > > > > > > > > , > > > > Thank you. Are Chad's wounds (little abrasions from playing) slow > to > > > heal? > > > > 's often are. I don't know if she could be anemic. I think I > will > > > call the > > > > Ped. tomorrow and ask if she thinks the bruising warrants a check-up > or > > > > blood work. It just keeps worrying me and she is being more active now > > > > with the warmer weather. The bruises are either small or medium, no > huge > > > > ones. I found on the internet about bruising a side-effect of steriod > > use > > > (oral)but > > > > not listed under corticosteriods, inhaled. She also has several broken > > > capillaries > > > > on her little face. She is very petite. She took allergy shots for 5 > > > years and > > > > they started helping in a few months from the start date. She stopped > > > getting > > > > frequent ear infections and also stopped the frequent really runny > nose > > > from > > > > allergies. She tested allergic to most of the pollens and animals and > > > molds. > > > > The doctor decided to limit her treatment to the trees and grasses she > > > would > > > > be exposed to more here because there were too many he said to put in > > the > > > > shot. He said we really needed to commit to 5 years and the frequency > of > > > > shots went down over the years. Her arms were so small at first they > had > > > to > > > > divide the dose between both arms(age 3, but really small and tiny) > and > > > she > > > > was so brave every time for the 1st shot, but cried for the 2nd arm. > As > > > soon > > > > as possible she went to one shot. The allergist/immunologist required > we > > > > wait 30 min. before leaving the Ped. after the shot. never had > a > > > systemic reaction, usually got a big or small hive at the shot site > > though. > > > > Their arms would be sore. She sometimes needed Benadryl or used > Claritin > > > > if already taking it that day. Often, she did fine and didn't need any > > > med. > > > > The Allergist was very strict about the Ped. checking the Peak flow > > before > > > > and after the shots and not giving shots during an asthma flare. My > son > > > who > > > > has CVID also took shots and had some mild systemic reactions where he > > > > got asthma symptons/coughing after the shot--just sometimes--but it > > scared > > > > me. We learned to premedicate him with Benadryl and watch the allergy > > > > mold count on shot days. He started getting large hives at the site > and > > a > > > very > > > > sore arm once he was on maintance and getting shots every 2 weeks or > > > > maybe it was at 3 weeks apart. He did better on the once a week shots. > I > > > was > > > > glad when it was over for him. did fine. She is much improved. > > > Still has > > > > problems during early fall, we think it is the ragweed. > > > > Jan, mom to Ben age 13 and age 9 > > > > > > > > > > > > > > > > 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 April 12, 2001 Report Share Posted April 12, 2001 - we were told that the pneumovax wouldn't be what determines if Macey restarted IVIG but her titers to Diptheria, Tetanus and MMR would. They retested the antibodies because they were hoping she had outgrown the problem. Plus the Prevnar was supposed to be fixed a better way than the pneumovax and they thought it might kick start her system. No such luck. Still no results but I'm calling tomorrow to check. 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 April 12, 2001 Report Share Posted April 12, 2001 - we were told that the pneumovax wouldn't be what determines if Macey restarted IVIG but her titers to Diptheria, Tetanus and MMR would. They retested the antibodies because they were hoping she had outgrown the problem. Plus the Prevnar was supposed to be fixed a better way than the pneumovax and they thought it might kick start her system. No such luck. Still no results but I'm calling tomorrow to check. 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 April 12, 2001 Report Share Posted April 12, 2001 Ursula, I'm sorry that it didn't help Macey. My guess is that it didn't help Chad either. Thank you for the information. I was really confused about this. Since you know Dr. Vogler yourself, you know why. I hope Macey is doing okay right now and that you will have a Happy Easter. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 9, 2001 Report Share Posted September 9, 2001 , Hi, and welcome to the group. This group has been the greatest thing since sliced cheese. Ha Ha. No, really, this has been a wonderful support to ask any questions that you might have and have many of us who have experienced what you are going through be able to offer as much insight as possible. With this insight, you and your doctors can make the best medical decision for your child. Now, my question: I thought you have to be off of IVIG for at the minimum of 3-5 months before doing any pre/post titers to any immunization? I might be wrong, but those results might not give you any conclusive evidence on how well the body responded to the immunization. If anyone knows any better, please chime in. I know that we usually get off the IVIG in April to begin testing sometime in July/August. Anyway, I hope you find the answers that you seek. Feel free to buzz in anytime. Belinda Rose, Mom to Allyssa (9) and Cassie (6), igg immunodeficient, asthma, chronic sinusitis, IVIG for 4 years. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 9, 2001 Report Share Posted September 9, 2001 , Hi, and welcome to the group. This group has been the greatest thing since sliced cheese. Ha Ha. No, really, this has been a wonderful support to ask any questions that you might have and have many of us who have experienced what you are going through be able to offer as much insight as possible. With this insight, you and your doctors can make the best medical decision for your child. Now, my question: I thought you have to be off of IVIG for at the minimum of 3-5 months before doing any pre/post titers to any immunization? I might be wrong, but those results might not give you any conclusive evidence on how well the body responded to the immunization. If anyone knows any better, please chime in. I know that we usually get off the IVIG in April to begin testing sometime in July/August. Anyway, I hope you find the answers that you seek. Feel free to buzz in anytime. Belinda Rose, Mom to Allyssa (9) and Cassie (6), igg immunodeficient, asthma, chronic sinusitis, IVIG for 4 years. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 9, 2001 Report Share Posted September 9, 2001 That's the million dollar question. Even though some patients don't mount a response the immunologist considers them protected if the titer level is over 200. Macey had 3 of the 12 titers under 200 and all of the 12 didn't mount even a 2 fold response much less the 3 fold the lab considered normal or the 4 fold the Duke immunologist was hoping for. But since 200 is technically the protective level then we consider her covered. That may dwindle over time and what may be showing up now is residual from years of IVIG infusions. The levels that are under 200 may be bacteria serotypes that she has been hit with since IVIG was discontinued and the infections have used up her reserve in that serotype. It might be she just hasn't been hit with the other 9 serotypes and that's why there is residual. Does that make sense? If 200 keeps her healthy and responding keeps her healthy then I'll take whichever she does. Both would be nice but infusions were a pain and difficult for her so I don't look forward to possibly restarting. I may think differently as the fall and winter hit but her GI system is keeping me hopping at the moment. We redraw in the fall so we'll see then. Ursula Holleman Macey's mom (6 yr. old with CVID, asthma, sinus disease, GERD, kidney reflux, Sensory Integration Disorder, Diabetes Insipidus) http://maceyh.home.att.net Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 9, 2001 Report Share Posted September 9, 2001 That's the million dollar question. Even though some patients don't mount a response the immunologist considers them protected if the titer level is over 200. Macey had 3 of the 12 titers under 200 and all of the 12 didn't mount even a 2 fold response much less the 3 fold the lab considered normal or the 4 fold the Duke immunologist was hoping for. But since 200 is technically the protective level then we consider her covered. That may dwindle over time and what may be showing up now is residual from years of IVIG infusions. The levels that are under 200 may be bacteria serotypes that she has been hit with since IVIG was discontinued and the infections have used up her reserve in that serotype. It might be she just hasn't been hit with the other 9 serotypes and that's why there is residual. Does that make sense? If 200 keeps her healthy and responding keeps her healthy then I'll take whichever she does. Both would be nice but infusions were a pain and difficult for her so I don't look forward to possibly restarting. I may think differently as the fall and winter hit but her GI system is keeping me hopping at the moment. We redraw in the fall so we'll see then. Ursula Holleman Macey's mom (6 yr. old with CVID, asthma, sinus disease, GERD, kidney reflux, Sensory Integration Disorder, Diabetes Insipidus) http://maceyh.home.att.net Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 9, 2001 Report Share Posted September 9, 2001 That's the million dollar question. Even though some patients don't mount a response the immunologist considers them protected if the titer level is over 200. Macey had 3 of the 12 titers under 200 and all of the 12 didn't mount even a 2 fold response much less the 3 fold the lab considered normal or the 4 fold the Duke immunologist was hoping for. But since 200 is technically the protective level then we consider her covered. That may dwindle over time and what may be showing up now is residual from years of IVIG infusions. The levels that are under 200 may be bacteria serotypes that she has been hit with since IVIG was discontinued and the infections have used up her reserve in that serotype. It might be she just hasn't been hit with the other 9 serotypes and that's why there is residual. Does that make sense? If 200 keeps her healthy and responding keeps her healthy then I'll take whichever she does. Both would be nice but infusions were a pain and difficult for her so I don't look forward to possibly restarting. I may think differently as the fall and winter hit but her GI system is keeping me hopping at the moment. We redraw in the fall so we'll see then. Ursula Holleman Macey's mom (6 yr. old with CVID, asthma, sinus disease, GERD, kidney reflux, Sensory Integration Disorder, Diabetes Insipidus) http://maceyh.home.att.net Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 9, 2001 Report Share Posted September 9, 2001 Ursula, When you say 200 I guess I dont' understand. My kids weren't reported that way. For example: Caelan's were the following all reported in micrograms IGG/ML. Type 1: 0.4 ug/ml Type 3: 1.3 ug/ml Type 4: 0.7 ug/ml Type 6: 2.6 ug/ml Type 8: 0.5 ug/ml Type 9N: 1.1 ug/ml Type 12: 0.5 ug/ml Type 14: 0.9 ug/ml Type 19F: 0.7 ug/ml Type 23F: 0.7 ug/ml Type 51 (7F): 0.6 ug/ml Type 56: 2.4 ug/ml It says that the reference values are 1.4, so they should be at a min. 1.4 each. He was only protected on 2 of them and close on one other. Grace's were similar. So are these protective or not? We have no idea and they lost the post vac titers b/c we revaxed again to see if anything went up or not. Re: pneumovax > That's the million dollar question. Even though some patients don't mount a response the immunologist considers them > protected if the titer level is over 200. Macey had 3 of the 12 titers under 200 and all of the 12 didn't mount even a > 2 fold response much less the 3 fold the lab considered normal or the 4 fold the Duke immunologist was hoping for. But > since 200 is technically the protective level then we consider her covered. That may dwindle over time and what may be > showing up now is residual from years of IVIG infusions. The levels that are under 200 may be bacteria serotypes that > she has been hit with since IVIG was discontinued and the infections have used up her reserve in that serotype. It > might be she just hasn't been hit with the other 9 serotypes and that's why there is residual. Does that make sense? > If 200 keeps her healthy and responding keeps her healthy then I'll take whichever she does. Both would be nice but > infusions were a pain and difficult for her so I don't look forward to possibly restarting. I may think differently as > the fall and winter hit but her GI system is keeping me hopping at the moment. > > We redraw in the fall so we'll see then. > > Ursula Holleman > Macey's mom (6 yr. old with CVID, asthma, sinus disease, GERD, kidney reflux, Sensory Integration Disorder, Diabetes > Insipidus) > http://maceyh.home.att.net > > > > > 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 September 9, 2001 Report Share Posted September 9, 2001 Ursula, When you say 200 I guess I dont' understand. My kids weren't reported that way. For example: Caelan's were the following all reported in micrograms IGG/ML. Type 1: 0.4 ug/ml Type 3: 1.3 ug/ml Type 4: 0.7 ug/ml Type 6: 2.6 ug/ml Type 8: 0.5 ug/ml Type 9N: 1.1 ug/ml Type 12: 0.5 ug/ml Type 14: 0.9 ug/ml Type 19F: 0.7 ug/ml Type 23F: 0.7 ug/ml Type 51 (7F): 0.6 ug/ml Type 56: 2.4 ug/ml It says that the reference values are 1.4, so they should be at a min. 1.4 each. He was only protected on 2 of them and close on one other. Grace's were similar. So are these protective or not? We have no idea and they lost the post vac titers b/c we revaxed again to see if anything went up or not. Re: pneumovax > That's the million dollar question. Even though some patients don't mount a response the immunologist considers them > protected if the titer level is over 200. Macey had 3 of the 12 titers under 200 and all of the 12 didn't mount even a > 2 fold response much less the 3 fold the lab considered normal or the 4 fold the Duke immunologist was hoping for. But > since 200 is technically the protective level then we consider her covered. That may dwindle over time and what may be > showing up now is residual from years of IVIG infusions. The levels that are under 200 may be bacteria serotypes that > she has been hit with since IVIG was discontinued and the infections have used up her reserve in that serotype. It > might be she just hasn't been hit with the other 9 serotypes and that's why there is residual. Does that make sense? > If 200 keeps her healthy and responding keeps her healthy then I'll take whichever she does. Both would be nice but > infusions were a pain and difficult for her so I don't look forward to possibly restarting. I may think differently as > the fall and winter hit but her GI system is keeping me hopping at the moment. > > We redraw in the fall so we'll see then. > > Ursula Holleman > Macey's mom (6 yr. old with CVID, asthma, sinus disease, GERD, kidney reflux, Sensory Integration Disorder, Diabetes > Insipidus) > http://maceyh.home.att.net > > > > > 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 September 9, 2001 Report Share Posted September 9, 2001 ursula, what do you mean by " protective " pneumovax? Is a non-responder (less than two-fold) considered protective? Re: pneumovax > - Macey has similar levels. Her IgG is 496 and pneumovax levels are protective but not responding. She has had > two pneumonias and several sinus infections as well as several ear infections since stopping. We have an agreement with > our pediatrician to aggressively treat any confirmed bacterial infections (xray, CT or elevated wbc) with Rocephin shots > (1-2 gm injections) and vantin antibiotic. We also do a CT of her chest every year to make sure her lung scarring > hasn't progressed from the pneumonias. Our agreement is that as long as her lung function tests don't decline, her > coloring is good, no extreme fatigue (she always seems alittle tired) and no blood infections then we will not restart > IVIG. Also complicating IVIG would be that Macey has few veins left and would require another medi-port to continue > infusions. Also she had started having reactions to the infusions before they were discontinued last year. She is 15 > months out of her last infusion. We have also discussed using IM IgG if there is a difficult infection to clear. > Boosting to clear the infection instead of just all out restarting infusions. We will redraw Ig and pneumococcal levels > in the late fall and unless the pneumococcal levels are unprotective or the IgG is less than 200 then she'll hopefully > continue off. > > Anyway, that's what we're going through. > > Ursula Holleman > Macey's mom (6 yr. old with CVID, asthma, sinus disease, GERD, kidney reflux, Sensory Integration Disorder, Diabetes > Insipidus) > http://maceyh.home.att.net > > > > > 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 September 9, 2001 Report Share Posted September 9, 2001 ursula, what do you mean by " protective " pneumovax? Is a non-responder (less than two-fold) considered protective? Re: pneumovax > - Macey has similar levels. Her IgG is 496 and pneumovax levels are protective but not responding. She has had > two pneumonias and several sinus infections as well as several ear infections since stopping. We have an agreement with > our pediatrician to aggressively treat any confirmed bacterial infections (xray, CT or elevated wbc) with Rocephin shots > (1-2 gm injections) and vantin antibiotic. We also do a CT of her chest every year to make sure her lung scarring > hasn't progressed from the pneumonias. Our agreement is that as long as her lung function tests don't decline, her > coloring is good, no extreme fatigue (she always seems alittle tired) and no blood infections then we will not restart > IVIG. Also complicating IVIG would be that Macey has few veins left and would require another medi-port to continue > infusions. Also she had started having reactions to the infusions before they were discontinued last year. She is 15 > months out of her last infusion. We have also discussed using IM IgG if there is a difficult infection to clear. > Boosting to clear the infection instead of just all out restarting infusions. We will redraw Ig and pneumococcal levels > in the late fall and unless the pneumococcal levels are unprotective or the IgG is less than 200 then she'll hopefully > continue off. > > Anyway, that's what we're going through. > > Ursula Holleman > Macey's mom (6 yr. old with CVID, asthma, sinus disease, GERD, kidney reflux, Sensory Integration Disorder, Diabetes > Insipidus) > http://maceyh.home.att.net > > > > > 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 September 9, 2001 Report Share Posted September 9, 2001 ursula, what do you mean by " protective " pneumovax? Is a non-responder (less than two-fold) considered protective? Re: pneumovax > - Macey has similar levels. Her IgG is 496 and pneumovax levels are protective but not responding. She has had > two pneumonias and several sinus infections as well as several ear infections since stopping. We have an agreement with > our pediatrician to aggressively treat any confirmed bacterial infections (xray, CT or elevated wbc) with Rocephin shots > (1-2 gm injections) and vantin antibiotic. We also do a CT of her chest every year to make sure her lung scarring > hasn't progressed from the pneumonias. Our agreement is that as long as her lung function tests don't decline, her > coloring is good, no extreme fatigue (she always seems alittle tired) and no blood infections then we will not restart > IVIG. Also complicating IVIG would be that Macey has few veins left and would require another medi-port to continue > infusions. Also she had started having reactions to the infusions before they were discontinued last year. She is 15 > months out of her last infusion. We have also discussed using IM IgG if there is a difficult infection to clear. > Boosting to clear the infection instead of just all out restarting infusions. We will redraw Ig and pneumococcal levels > in the late fall and unless the pneumococcal levels are unprotective or the IgG is less than 200 then she'll hopefully > continue off. > > Anyway, that's what we're going through. > > Ursula Holleman > Macey's mom (6 yr. old with CVID, asthma, sinus disease, GERD, kidney reflux, Sensory Integration Disorder, Diabetes > Insipidus) > http://maceyh.home.att.net > > > > > 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 September 9, 2001 Report Share Posted September 9, 2001 , I would like to caution you on stopping IVIG even thought you had no problems. My daughter 11 CVID has played the roller coaster game with her treatments. No IVIG all summer did great stopped IVIG and by January very sick and it took the rest of the winter bring numbers where they need to be. We again did treatments and she was doing great. Tried to stop again and once again four months down the road antibiotic would not work. We went a full year with treatments and she did great. We have started our second full year and she is having a rough start at school this year. I guess what I learned is we thought she was doing well and levels just dropped so low it was hard to get them back to the normal range. I am not basing this on any medical advise just what happen with us. I wish you the best of luck knowing what a hard decision this is. Lorri * CVID 11 yrs pneumovax Quote Link to comment Share on other sites More sharing options...
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