Guest guest Posted January 19, 2012 Report Share Posted January 19, 2012 Yes my daughter is the same way. She is on IVIG now so doing better ~~~ Byrd ~~~ I always know... God won't give me more than I can handle.There are times I just wished he didn't trust me quite so much. ________________________________________________________________________________\ ________________ ________________________________ From: Christi <christi1211@...> Sent: Thursday, January 19, 2012 4:39 PM Subject: Pneumococal titers My sons titers were zero in July they revaxed with the pneumonitis instead of prevnar and 8 of the 23 came up in Nov. They just rechecked and they are back to less then. 3. Uggg anyone else have this happen? Sent from my Verizon Wireless Phone April <n2katz2003@...> wrote: >My son, Ryder, is 4 years old and has been on weekly Hizentra infusions for a year now after being diagnosed with CVID. His infections have gone down a ton since starting infusions which we were very happy to see. > >He has always had very large tonsils. It seems like every time we go to the pediatrician they end up testing him for strep (even at well child visits when he has no other symptoms) because of how large and red his tonsils are. A lot of the time it comes back negative, but he has also had positive strep tests several times. Today the pediatrician brought up the idea of having his tonsils and adenoids removed. We have an appointment with his Immuno on Monday so I plan to talk to them about it. > >Has anybody had a child with this? Has anybody had a child get their tonsils/adenoids taken out? It doesn't seem like the large tonsils bother him at all, but if they are harboring infection then that could be the reason for his chronically swollen lymph node behind his ear. > ------------------------------------ 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 19, 2012 Report Share Posted January 19, 2012 Its called an antibody deficiency and the reason why they give kids IG. To give them the antibodies their bodies do not make. The failure to hold the titers is how the know they need the IG. > > ________________________________ > From: Christi <christi1211@...> > > Sent: Thursday, January 19, 2012 4:39 PM > Subject: Pneumococal titers > > My sons titers were zero in July they revaxed with the pneumonitis instead of prevnar and 8 of the 23 came up in Nov. They just rechecked and they are back to less then. 3. Uggg anyone else have this happen? > > > Sent from my Verizon Wireless Phone > > April <n2katz2003@...> wrote: > > >My son, Ryder, is 4 years old and has been on weekly Hizentra infusions for a year now after being diagnosed with CVID. His infections have gone down a ton since starting infusions which we were very happy to see. > > > >He has always had very large tonsils. It seems like every time we go to the pediatrician they end up testing him for strep (even at well child visits when he has no other symptoms) because of how large and red his tonsils are. A lot of the time it comes back negative, but he has also had positive strep tests several times. Today the pediatrician brought up the idea of having his tonsils and adenoids removed. We have an appointment with his Immuno on Monday so I plan to talk to them about it. > > > >Has anybody had a child with this? Has anybody had a child get their tonsils/adenoids taken out? It doesn't seem like the large tonsils bother him at all, but if they are harboring infection then that could be the reason for his chronically swollen lymph node behind his ear. > > > > > ------------------------------------ > > 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 19, 2012 Report Share Posted January 19, 2012 Thanks guys, that makes more sense. We meet with the Dr on the first to go over these new results so I am anxious to see if he recommends the invigorated route. Eventually with the infusions will they keep the numbers up or will the infusions always be needed? Sent from my Verizon Wireless Phone bluetaelon@... wrote: >Its called an antibody deficiency and the reason why they give kids IG. To give them the antibodies their bodies do not make. The failure to hold the titers is how the know they need the IG. > > > >> >> ________________________________ >> From: Christi <christi1211@...> >> >> Sent: Thursday, January 19, 2012 4:39 PM >> Subject: Pneumococal titers >> >> My sons titers were zero in July they revaxed with the pneumonitis instead of prevnar and 8 of the 23 came up in Nov. They just rechecked and they are back to less then. 3. Uggg anyone else have this happen? >> >> >> Sent from my Verizon Wireless Phone >> >> April <n2katz2003@...> wrote: >> >> >My son, Ryder, is 4 years old and has been on weekly Hizentra infusions for a year now after being diagnosed with CVID. His infections have gone down a ton since starting infusions which we were very happy to see. >> > >> >He has always had very large tonsils. It seems like every time we go to the pediatrician they end up testing him for strep (even at well child visits when he has no other symptoms) because of how large and red his tonsils are. A lot of the time it comes back negative, but he has also had positive strep tests several times. Today the pediatrician brought up the idea of having his tonsils and adenoids removed. We have an appointment with his Immuno on Monday so I plan to talk to them about it. >> > >> >Has anybody had a child with this? Has anybody had a child get their tonsils/adenoids taken out? It doesn't seem like the large tonsils bother him at all, but if they are harboring infection then that could be the reason for his chronically swollen lymph node behind his ear. >> > >> >> >> ------------------------------------ >> >> 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 19, 2012 Report Share Posted January 19, 2012 Its replacement therapy so it will always be needed for life although some kids will outgrow it at puberty and some like mine you find a root cause for. Were about to celebrate 180 day days off SCIG and pulling labs. So far it really looks like my dd's CVID was caused by Pyroluria which causes a severe deficiency of Zinc and B6 which is easily treated. Basically it boils down to no Zinc=no immune system. Regular Zinc testing doesn't detect it, you have to test for Pyroluria which causes a functional Zinc deficiency, blood levels will be normal but it never makes it into the cell for use. 11, CVID, 5 years on IG. ---- Christi <christi1211@...> wrote: > Thanks guys, that makes more sense. We meet with the Dr on the first to go over these new results so I am anxious to see if he recommends the invigorated route. Eventually with the infusions will they keep the numbers up or will the infusions always be needed? Sent from my Verizon Wireless Phone bluetaelon@... wrote: >Its called an antibody deficiency and the reason why they give kids IG. To give them the antibodies their bodies do not make. The failure to hold the titers is how the know they need the IG. > > Quote Link to comment Share on other sites More sharing options...
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