Discussions By Condition: Immune conditions

hypogammaglobulinemia-2nd opinions

Posted In: Immune conditions 17 Replies
  • Posted By: Anonymous
  • June 5, 2006
  • 06:53 AM

Hi, I'm a Mom with a 21 mt old recently diagnosed this Jan with hypogammaglobulinemia. He has had several sinuses surgeries and a port placement since diagnoses.They have cultured out candida and many bacteria from the sinuses during a surgery. They have ruled out ciliary dysfunction after the ciliary biopsy was sent to the Mayo. His sweat test was normal so he does not have CF. He looks healthy and does not fit the failure to thrive label. He has been allergy tested last year which came out negative. He just last week got retested for allergies since myself and my husband have several allergies between us and his asthma problem. He has had some ear infections which led to getting tubes in his ears and adnoids out. He is receiving IVIG every 3 weeks and sometimes sooner if acutely sick. He finished a 4 mt treatment of IV antibiotics and IV antifungal meds for severe pansinusitis. He just switched to oral antibiotic (bactrim) and within 3 days started getting sick again. They added omnicef, fluconazole, did the IVIG dose one week sooner and told me to hang in there. There is talk of increasing his IVIG dose since the frequency can not be increased. They want to rescan his sinuses in 3 weeks to see if he is worsening again, and if so, restart the IV meds. He started wheezing out of the blue was hospitalized with bronochiolitis and diagnosed and treated for asthma at Easter. We still can't get him off the oral steroids for the asthma. When we lower the dose he starts in again. My (ID)-Infectious disease doctor told me that she or the ENT doctor would not be offended if we wanted to get a 2nd opinion for diagnoses and/or treatment options. She thought the Mayo would not be the best place but said they are very good at diagnotics. She suggested going to another pediatric hospital that treats primary immune deficiency. Right now we are going to Children's Hospital of St. Paul and Mpls in MN for his treatment. Not sure what to do or where to start. I need help from people that have been though this kind of stuff. :confused:

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