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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  • natlief - i am curious of how this started with your child? what were the symptoms and how early did this start? i have a 9 month baby. he has been sick nearly all his life. he started having ear infections at 3 1/2 weeks. a few weeks after that the bronchialitis started. then at 3 months he had to be rushed in for surgery for intussusception. he stayed well for about 3-4 weeks after surgery, then started over again with ear infections & respiratory infections. he had tubes at 6 months and since then still has ear infections & now they are saying the respiratory problems are asthma. he clears up for a week or so after coming off antibiotics, then it all starts over again. he has had numerous steroid shots & 4 sets of rocefin shots, not to mention the oral antibiotics. a couple of weeks ago, after being sick for a few weeks, he developed streptococcal pneumococcus infection in his blood. so we were in the hospital for a week with IV antibiotics. he has been well for nearly 2 weeks & is starting to get sick again. they have done several tests on him already. right now they are doing the CH 50 test for more detail. they did some tests on his titers while he was in the hospital & thought they had found where he might not be producing antibodies to fight off just the pneumococcus type infections. so they are doing these tests now. it is just frustrating to think there is an underlying cause, but we cant find it. like you said your child doesn't fit the failure to thrive label, mine is the same way. he is a picture of health, eats well, gains weight. i think that is why the drs are just so caught off guard with this. i would appreciate any input you might have about this.
    Anonymous 42789 Replies Flag this Response
  • Hi KristiM, My son was born at 37 weeks. I was induced for pre-eclampsia, normal delivery otherwise. I have 3 other children other than him. I noticed right away from the time he was born that was he very congested sounding. He couldn't breathe well through his nose. I could not breast/bottle feed him laying down in bed like the others. He spitted-up more than the others. So our doctor diagnosed him with GERD. He started on zantac then switched to prevacid. He got thrush of his mouth several times before 6 mts of age. He had lots if ear/sinus infections early on which led us to an allergist who took him off of milk products (5-6mts). That did not make and difference for the congestion and ear infections. We reintroduced the milk-based formula and breast milk. She allergy tested him both through blood and skin--all were negative. She then referred us to an ENT (10mts). The ENT said he has big anenoids and would benefit from ear tubes. He got his adenoids remove and tubes in his ear at 12mts. He continued to have sinus and nasal congestion problems. He wouldn't sleep at night, he would bang his head, and put things in his ears. Finally, they ordered at sinus CT at 15 mts. It showed severe pansinusitis. The ENT referred us to a ID-Immunology doctor. This doctor reviewed his records and for that he had low IGG and IGM levels at 9 mts of age and wasn't sure why the allergist didn't do anything about it. The ID doctor ran more test on his immunity and found he was low on total immunoglobulins and certain vaccine titers did not responded well. She then diagnosed him with hypogammaglobulinemia with a specific antibodies deficiency. She started treatment for the hypogam. with IVIG every 3-4 weeks. She started treatment of IV antibiotics and IV antifungal after his sinus cultures grew out candida and many bacteria. The IV sinus treatment lasted about 4 mts then the CT looked better so we stopped. But, I think we may have to restart them again. He did started wheezing over Easter (19mts). He was hospitalized and got better. He continues to wheeze especially at night. We are still trying to rule out allergies and GER problems that might be contributing to his wheezing. Steroids have always made him better and when he was off he would start in again. The pneumococcus vaccine titer was one that did not respond well enough. Those antibobies were low and the fact that he has had many infections early on is why he is getting the IVIG every 3 weeks. From what I now understand is that there is not a cure for this but there are treatments (IVIG and antibiotic prophalytics) that will help prevent future infections and/or decrease the severity. He is more prone to infections and they are more severe and last longer than the average child. If I were you, I would take him to an Immunology/ID doctor for a correct diagnoses and treatment plan because that sounds alot like my child. But, unlike my child he is alot younger and is able to get on board right away before infections get more severe and harder to treat. I am still looking for a 2nd opinion for diagnosis and treatment options to ease my mind that we are doing everything possible for him.Best of luck! And Please keep me posted.Natalief
    Anonymous 42789 Replies Flag this Response
  • natalief - thank you so much for the reply! your information is so helpful. our situations sound very similar. this is my 3rd child. this is also an experience we have never had with our other 2 children. the frustrating part is getting a dr to actually sit down, listen to you & to look at things from beginning to end & see that what he has been through in 9 months seems to be excessive. he gets sick & like you said, it is a lot harder for him to fight it off. it almost always turns from a cold type symptom to an infection. we have dealt with the breathing problem since he was about one & half months old. it seems to only get worse. we have been through asthma with my oldest son, but it is nothing like our baby. he has had more breathing treatments than our oldest child by far and his attacks are so much worse. we give him breathing treatments sometimes & it is like you are doing nothing for him. then we get the steriods started & he does better until we get off. just like antibiotics, he takes those and after he is off for a few days he starts going downhill again. and now it seems like the oral antibiotics are not as effective & he gets the rocefin shots. then he will stay clear for about a week or two. we have been out of the hospital for 2 weeks, he had 7 days of IV antibiotics for the bacterial infection. now the cold symptoms are starting over. red rings around eyes, low grade temp & now coughing sounding congested. so i am sure it is a matter of time before we are back to the dr again. while he was in the hospital, they tested his titers. the dr said that his titers didnt respond well & that some of the titers were covered under the pneumococcus vaccine he has been given. so that makes his ped think he is having the immunity problem to the pneumococcus. he talked to an immunologist that told him to do the CH 50 test. they did it yesterday. he said we would hear back from it next week. but will this tell him if there is a problem there for sure? are there other tests i should push for them to do? his ped just keeps talking about he is just too healthy to have anything like this wrong with him. i just think that with him looking as healthy as he does, they will not push for the answer here. they will just keep blowing it off. i have so many people telling me, oh he will outgrow it. people dont realize all he has been thru from the beginning. if there is something there causing all this, i just want to find it so that we can deal with this in the best way we can. the more i read, the more it sounds like what we might be dealing with. i just hope that they do the right tests to find it if it is this. thank you so much for your input. i know i am no help for you, but i am so thankful i found someone that i can ask about this. one more question, you mentioned the head banging your child does. did that set off any alarms to the dr to do a CT because of that?? my baby has off & on done a lot of head banging. we used to think it was with ear infections, but he does it when his ears are not infected. but each time i have mentioned it, the dr says he could be having headaches. makes me wonder what could be causing him to do that. i have wondered that since he started doing it.thanks again! kristim
    Anonymous 42789 Replies Flag this Response
  • Hi kristim, I know exactly the frustration you are feeling right now. It's hard to get the doctors to listen and take action. It took us 16 mts of misery and 30-some antibiotics and steroids before something was started. I kept saying to myself, I wish these doctors could take care of him for one week and then see what tests they would do. I'm not sure what this CH 50 test is. They did IGG, IGM, IGA, IGE, IGG subclasses, CBC with differential, post titers to diptheria, tetanus, hib, pneumococcal, & sweat test. I know how you feel when they keep saying how healthy he like so there is probably nothing wrong. My ID doctor told me this is usually what they see and when they look unhealthy and failure to thrive it is usually other illnesses like CF etc... Don't let them use that for an excuse to not do testing and/or treatment. We were first told that he might out grow this but now they are unsure. Only time will tell. I don't think something is causing his condition but rather he was born this way from either genetic or a mutated genes. The head banging came along his sinus symptoms. He would always have a running nose. Sometimes it was thick and got thinner as the day went on. Sometimes it would be yellow or green. His ears usually looked good. But, he would have a low grade temp. I kept telling them it's not his ears maybe it's his sinuses. They told me that children usually don't get sinus infections. Finally, after going to the ENT several time they did a CT to reassure me that nothing was wrong. It was one of the worst pansinusitis they have seen. The doctor said "Mom's are usually right. And we should listen to them more often". 16 mts of pure misery!!! Finally! So my advice to you is keep pushing them into the right direction and eventually it will pay off.If there is anything else I can do, please ask. I may not know all of the answers but I do know that there are others that are going thought this too.Keep me posted.NatalieFPS Where do you live?
    Anonymous 42789 Replies Flag this Response
  • Hi NatalieF - I can't imagine dealing with that for 16 months! I know these have been 9 long months for us. We just want him to be well & feel better. Sometimes you just want to ignore everything & hope it goes away, but you can't! I know it is hard for people to understand when they have not been in this position. There are so many that think you are just being paranoid when they ask how he is & you tell them he is getting sick again. But we know, those little symptoms that seem mild, only turn into something else before the end of it. It should be a red flag when you have had 2 life threatening illnesses & almost been hospitalized 3 other times for sickness within the first 9 months of life. I guess they don't want to jump the gun on anything and try to only go on what they have at the time. It gets to a point that someone needs to look at the whole picture. They have done the CBC with differential, Quantative Immunoglobulins, Post Titers to Pneumococcal(not sure if they tested others). His CBC showed possible anemia, the Quant. Imm. didnt show anything, the Post Titers to Pneu. showed he was not responding like he should. We have also had the sweat test & a TB skin test. Those were both normal. The dr said that what he found with the titers tests would not have shown up on the Quan. Immunoglobulins test, b/c this would be one little thing he could not fight off as opposed to the system as a whole having a problem. Now they are doing the CH 50 (Total Complement Test), which tests the complements to the titers. I hope it will find & show the dr what they need to see. This is all so new to me. I have never heard of this stuff before now. I know it is so complicated, but I hope I can learn enough to be satisfied & comfortable when they tell me what they think the problem is and whether I need to push for more answers. We have been dealing with thinking there was an underlying problem since April. They just have not been able to pin point it yet.I know I gave you a little background on my son. Before he was 2 weeks old they had to cauterize his belly button b/c it would not heal. Then at 3 1/2 weeks he had ear infections in both ears. At about 8 weeks he had bronchialitis, followed by croupe. At 3 months he had the intussusception & had surgery. About 3 weeks later, we started over with ear infection, followed by bronchialitis. We would take antibiotics, then steriods. Would clear up a few days after getting off of them, then the cycle starts over. He wakes up congested & then gets a little worse each day. He has only had "fever" a few times in all the sicknesses that he has had, but he keeps a low grade temp around 99.9 going up to 100.4 constantly. That is enough to tell me something is still going on when he doesn't have the obvious symptoms. Even when he was sick as could be & his WBC was so high, they could not figure out what was wrong with him. He still had just low grade temp. They gave him the rocefin shots & he cleared up for a week or so. At 6 months he got tubes in his ears to see if that would get rid of that infection & quit triggering the asthma symptoms. The week after tubes, he had an asthma attack during the night. After giving him breathing trtmts, he was gasping for air. Very scary! Then the next week, the ear infections started again. They put him on oral antibiotics & after 4 days of that his fever went up over 101. Then he got the rocefin again and of coarse cleared up a little while. A few weeks alter he started getting sick with breathing problems. We did breathing trtmts for 2 weeks, then he started getting worse & we took him to the ER with fever of 102. They did a blood culture, CBC & chest xray. In less than 24 hours the culture was positive. That is when we stayed in the hospital 7 days for antibiotics. That was 2 weeks ago & he is starting to have the cold symptoms now. There are several other sicknesses in between these times I am talking about. It just seems like a lot! By the way, I live in Alabama. The Immunologist our dr is talking to is from Birmingham at Childrens Hospital. KristiM
    Anonymous 42789 Replies Flag this Response
  • Kristi: Do you have a specific record of the vaccines your child received since birth? Do you have access to the medical records containing the names and lot numbers (they should be available)? Has the physician requested these? Did he ever have a flu vaccine? The flu vaccine may contain Thimerosal which has been linked to many of your child's symtoms. If there is a corelation you must reply in a very limited and short time period after discovery, and it seems not well received to pursue this by the physicians especially if they gave the vaccine. I have a personal interest in this. If you would like more information or I can assist in any way email at sbork@medlawresources.com. Good luck.
    Anonymous 42789 Replies Flag this Response
  • legalnurse:he did not receive the flu vaccine. they would not administer it before 6 months. the dr that is caring for him & running the tests is the pediatrician group he has had since birth, so they have access to all the vaccines he has had. the immunologist the ped is talking to is in another city & has not seen all his medical records. he is just going on what the ped is telling him over the phone. he has had the following vaccines: (2 months) DTaP#1, HIB, HepB, Prevnar, IPV; (4 months) DTaP, HIB, Prevnar, IPV; (6 months) DTaP, HIB, Prevnar; (9 months) HepB. thank you for your interest! i appreciate any input! kristim
    Anonymous 42789 Replies Flag this Response
  • Just want everyone to know i did find a place for a 2nd opinion for my son. We decided to go where they specialize in immunodeficiencies. There is a program in Cincinnati, OH. If there are any suggestions for the actual appt let me know. Or if you want more information about the program let me know.
    Anonymous 42789 Replies Flag this Response
  • natalief - that is great that you are getting your 2nd opinion. we had to take our son back to dr yesterday b/c he is getting worse again. the ped put him on steriods again & said if not better beginning of next week, he will start antibiotics then. he did put in a referral for us to go to the immunologist. the complement test the peds did, didnt show anything. our ped said yesterday he is afraid we will go to the immunologist & he will make a diagnosis & want to do treatment. the ped said if it were him, he would wait till the baby is 2, then start looking for the diagnosis. i know that is being conservative, but if there is a problem there, wont it still be there when he is 2? if we wait till he is 2 & he is still sick, we will be a year behind on what we could have already been treating. so confusing! you dont know who to trust. there days when you are ok with being conservative, but then when he is real sick again, you are scared & want an answer if there is one. kristim
    Anonymous 42789 Replies Flag this Response
  • KristiM, Your son sounds almost like my son. As you know he didn't get diagnosed until 16 mts of age. Now, we are still dealing with the severe pansinusitis he got because he was not getting the right treatment (IVIG etc.,) He was on 4 mts of IV antibiotics every 8-12 hours and IV antifungal every day along with IVIG every 3 weeks. He just recently switched over to oral medication because he was getting better and they thought the IV stuff might be suppressing things. Several days after going off the IV meds he started getting sick again. He most likely will restart the IV meds soon. Waiting for a CT appt. The infection he had was one of the worst they have seen and said if he had started treatment earlier it would have not gotten as bad. The point is, we are still dealing with it and he is not even 2 years old. I would not wait!! I would go see the immunologist - now before it gets worst. I know exactly what you are going through - emotionally, psychologically, and financially. But, I can not stress enough you need to get all the questions answered now and keep on top of these doctors because no one else is going to do it but you. They have nothing to lose or gain. You do!!! This is why I am getting a 2nd opinion because things do get over looked or they concentrate too much in one area. Then, if the information is the same, I'll have peace of mind knowing I did everything humanly possible for my son.
    Anonymous 42789 Replies Flag this Response
  • NatalieF: I know this has got to be the toughest thing we have ever dealt with. I know it is hard for those dr's to single you out as one family, one patient & really think about things from beginning to end. I guess until you are in a situation with a child being so sick, you just can't understand the concern of a parent. Not to mention just wanting your child to be well for an extended period of time! I think also, seeing the different drs, it is hard for them to keep track of each thing that has happened. With the other dr seeing him at his sickest times, & our regular dr seeing him on the colds, etc. he might not be as alarmed as the other dr. But you know, there is a time to sit down & really study something when it is questionable. So I have to remind myself to trust my instincts when it comes down to it. Our dr might not really have that same opinion if he really sat down & studied my son from the time he was 2 weeks old when it all started. Right now, my instincts tell me going to the Immunologist is where we need to be. Even if it is for them to tell us we are ok, we need that reassurance. I dont think it is premature for us to get their opinion at least. Thank you for the reassurance. It really does help to have your opinion with the experience you have. Please keep me posted on your son as well. KristiM
    Anonymous 42789 Replies Flag this Response
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  • 1 in 10 people are Gluten-SensitiveAre you the one?Not sure this is something you would consider but from the yahoo group on this people are always talking about all the sinus and ear infections and ashtma getting better on a gluten free diet.www.celiac.comand http://www.doctorgluten.com/
    Anonymous 42789 Replies Flag this Response
  • Don't be afraid of a diagnosis of hypogammaglobulinemia. My son was diagnosed with infantile hypogammaglobulinemia when he was just 2 years old after many infections. He was not failure to thrive, just sick often. :) He is now 17 years old, has been infection free for several years, and is a bright, talented young man who plays many instruments and is going to move to Nashville soon. Yes he still needs an IV every 4 weeks. It seamed like we lived at the doctors when he was little. Our regular doc sent me to an EMT to "prove" that my son was ok, and he actually had a double ear infection. We saw more specialists over the next year or so, some of them telling me that I was over reacting and others telling me that he was retarted and I needed to deal with it... Goodness... he couldn't hear from the infections and was slow from the constant illnesses. Dr Nahib Abdou from Kansas City literally saved his life. He curtly told me that he was going to do one blood test and he either could help or he couldn't. 10 days later I sat in his office in shock as he explained that parts of his IGG and IGA were very low and that he needed an IV every couple of weeks. It was every 2 weeks at first, going to three and then 4. It took 5 hours to infuse him because there were very few pediatric patients at that time and they wanted to be careful he didn't have a neg reaction. It was a tough first couple of years, but I did everything possible to make his life as normal as possible. He still perfortmed his first violin concert wearing a medical mask at age 3 and if it was flue and cold season we didn't go to church. Its normal to live with fear and worry when its your child, but I just worked on never showing it to him. I hope my rambling helps. So many old memories are flooding through my head I just can't type fast enough.
    Anonymous 42789 Replies
    • August 17, 2006
    • 05:24 PM
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  • Just want everyone to know i did find a place for a 2nd opinion for my son. We decided to go where they specialize in immunodeficiencies. There is a program in Cincinnati, OH. If there are any suggestions for the actual appt let me know. Or if you want more information about the program let me know.I am just seeing your post. I am not sure if you have already been to Cincinatti, but this is where my nearly 3 yr old daughter is treated at and all I can say is that it is absolutely the best place to go for these types of disorders. They were top notch and very compassionate in every level of care. I also want to give you hope. My daughter used to be in the hospital every 6 week with pneumonias and other serious infection. Now we are soley using the profilatic antibiotics (zithromax) and the nebulizer treatments of Pulimcort and Atrovent. Yes, she still gets a lot of colds, but it is no where near what it once was. She has not been hospitalized in nearly 8 months. I pray that time and medicine can also help your child as it has ours.
    Anonymous 42789 Replies
    • September 18, 2006
    • 11:12 PM
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  • HI all please look at the pia website Primary Immunodeficiency Association website there is a discussion forum on there lots of parents with children who have CVID (hypogammaglobulanemia) they are very supportive and helpful there is also lots of information about immunodeficiencies:)
    Diane Sistern 29 Replies
    • January 30, 2007
    • 09:08 AM
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  • My name is Michele and when I was a baby I was diagnosed with hypogammaglobulinemia. I was under a year old and my mom said if I made it to the age of 2 then my mother should praise the lord because I was a gift. When I made it to six, they said I wouldn't make it to ten and when I turned ten she said that I would never have a period or any sexual growth in ANY way.I am now 20 years old, have a relatively normal mensuration cycle and am pretty healthy.I do feel the need to let everyone know about some side effects though. My body never completely grew properly. I am 4'10 and some change, and have a VERY flat chest although every woman in my family is in the DD range, which could very well have been just a roll of the dice, but to be honest my puberty didn't work the way most women's do.My eye sight is awful and I just miscarried twins not too long ago... The chances of me having children aren't the best, although my uterus is perfectly healthy. It is just my eggs.For all of you parents out there, I would just like to let you know that it is most likely for baby girls to have it, and they are born with it. They can't catch it. A baby is born with it when two parents have incompatible eggs of some sort. Both this sperm and this egg are very uncommon but when they are put together, you are very likely to have a child with hypogammaglobulinemia.This is not a death sentence anymore ladies because they can give your babies the same transfusions they tested out on me. I am alive because of those doctors and because of the wonderful first time tests they did on me I am proud to say that I am one of the very first hypogammaglobulinemia survivors... Do not worry, you babies are most likely safe, but let your doctors know your suspicions.
    Anonymous 42789 Replies
    • January 18, 2009
    • 06:52 AM
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  • Hi Natalie,I realize these posts that I am replying to are quite old, but I wanted to thank you for posting this, I am in a similar situation with my 5-year-old son now. We have been to Mayo and are working with a fabulous Immunologist at St. Paul Children's. I was hoping you still participate in the boards and would see this. I'd love to hear how it is going for you now.TIA!!!
    Anonymous 42789 Replies
    • February 9, 2010
    • 04:23 PM
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