Guest guest Posted January 19, 2012 Report Share Posted January 19, 2012 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. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 19, 2012 Report Share Posted January 19, 2012 My youngest does not have an immune deficiency, but was a preemie with other complications. She had enlarged tonsils but no recurrent tonsillitis/infections. It was hypertrophic tonsils (extra tissue) and caused very scary obstructive sleep apnea. The ENT kept trying to schedule the surgery/fit it in with the hospital's schedule, until we had to do it emergently. She had her tonsils and adenoids out and is absolutely fine! She is 5 1/2 and had the surgery in June 2011. She stayed in the hospital overnight, due to her lung issues, but most kids do this as an outpatient procedure. Mindy, mom to seven special kiddoes > 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. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 19, 2012 Report Share Posted January 19, 2012 Macey was born without tonsils but her older sister (non-PID) had large tonsils that harbored strep. She was a strep carrier. She had her tonsils out around 7 years old. We scheduled it the same day as one of Macey's IVIG treatments and had them in adjoining beds in the outpatient center at the hospital. Both hooked up to IV's and both having complications. Macey decided to drop her pressure to 50/30 and started bleeding from her tonsil sites. Never will we try a 2-for-1 special again. LOL. (I can laugh about it now). Ursula mom to Macey (16,CVID) On Thu, Jan 19, 2012 at 4:36 PM, <mindy@...> wrote: > ** > > > My youngest does not have an immune deficiency, but was a preemie with > other complications. She had enlarged tonsils but no recurrent > tonsillitis/infections. It was hypertrophic tonsils (extra tissue) and > caused very scary obstructive sleep apnea. The ENT kept trying to > schedule the surgery/fit it in with the hospital's schedule, until we had > to do it emergently. She had her tonsils and adenoids out and is > absolutely fine! She is 5 1/2 and had the surgery in June 2011. She > stayed in the hospital overnight, due to her lung issues, but most kids do > this as an outpatient procedure. > > Mindy, mom to seven special kiddoes > > > > 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. > > > > > > > Quote Link to comment Share on other sites More sharing options...
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