Guest guest Posted October 25, 2011 Report Share Posted October 25, 2011 Sara, I do not have answers to your questions as I share your questions and confusion. In so many ways, I identify with your story. My daughter who is 3 is sick constantly. She has been diagnosed with pneumonia multiples times, pansinusitis as well as the " run of the mill " strep, bacterial tonsillitis and ear infection. We will be looking at DTaP titers in a couple of weeks and a few other things I think. At last check her numbers were barely normal or near normal - though 4 months ago her levels were pretty bad. I am still learning so much. So here is my advice: Listen to your gut. In my (humble) opinion, this field of immunology is still in its infancy. There is a lot they know but even more that they do not know yet or that does not have a name on it. By my daughter's labs (at the moment) she should not be sick as frequently as she is. - Since July 1 of this year she has been on an antibiotic for about 15 weeks total and has not got more than 8 days without getting sick while on an antibiotic. So, keep asking questions, listen to your instincts. Sorry I couldn't give you more definitive answers. On Tue, Oct 25, 2011 at 1:32 PM, little.sara@... < little.sara@...> wrote: > ** > > > Hi- > > I'm Sara, mom to who is 5 and 1/2. I'm honestly surprised to be > here...immune issues were nowhere on my radar. My husband is active duty > military and is our third child. The short version is, he's now had > pneumonia 3 times in 6 months, prompting immune testing which came back with > low IgA and total IgG. > > Here is the longer version... (I posted this elsewhere, sorry if it is > duplicate for anyone. My questions are at the bottom if you want to skip > this part.) The pediatrician flagged him at 12 months for growth monitoring, > after he had rotavirus, lost weight, and failed to regain it in a 3 month > period. Then we moved to China and spent two years with erratic medical > care. His growth has always been borderline and I asked about it and was > always dismissed. We moved back here (to Virginia) when he was 3 and again > have the same pediatrician we had when he was a baby. (I love this doctor!) > was still very much smaller than his siblings, but seemed to be doing > well other than continuing intermittent GI stuff, so I didn't press it. > Developmentally he is great. He's had the usual childhood illnesses but I > didn't think anything too extraordinary or frequent ....a couple weird > things (MRSA as a newborn, a weird abscess at 3) and one LONG stretch of > repeat ear infections at 3 - 4.......in between, he was fine and we > certainly never thought of him as " always sick " or anything like that. > Though we did always comment that it takes him a long time to recover from > illness. Finally, although still small, he had a BMI in the 65th percentile > at 4 and I quit worrying about the GI stuff. > > Then last year in March he had a routine checkup and we found his weight > was a lot lower than we thought. We put him on pediasure but my ped. didn't > seem to think much of it. End of March he got pneumonia and strep. His GI > issues got worse- constant diarrhea through June despite probiotics. > Pneumonia and an ear infection in June. He had to go on a second antibiotic > that time, after the first one had no effect. By June his BMI was in the 3rd > percentile and he was referred to GI and screened for celiac (neg). GI at > Walter was an unhelpful jerk. The diarrhea continued. In July > weighed less than he had a year prior (he still does!). We saw pediatric > nutrition at Bethesda. His diet is good. My husband demanded a second > opinion from GI. (still haven't had that appointment) In Sept, pneumonia > again, along with an ear infection. This time he also needed a second > antibiotic. Ped.found this third pneumonia very alarming and insisted on an > xray this time which confirmed it. We went for CF screening at > Bethesda...that was very negative. They also evaluated him for asthma and > found nothing to really indicate asthma in his history. (I do have another > child with asthma but he is very different from , allergies and all that > which has never had.) So then we did the immune screening. Pulmonary at > Bethesda told me not to bother, but again my pediatrician insisted. (I love > him) To my great surprise, the numbers are low: total IgG is 434 and IgA 33. > IgM was normal, and he ran a tetanus titer which was also normal. He did not > run the pneumo/hib titers. > > We have an immunologist appointment on Nov. 9th. Meanwhile, my son has been > sick again... after two bad weeks, diagnosed last week with a sinus > infection. He's back on antibiotics and just today I notice he is looking > really perky, which I haven't seen in a long time. He is still alarmingly > thin, but his energy level is good. I'm a lot more comfortable sending him > to kindergarten with those antibiotics on board. This whole thing has me > jittery. > > I've done a lot of reading ..most kids still seem overtly sicker than mine > prior to this kind of diagnosis...although he has been sick enough for the > last 7 months, I guess. I expect the first thing the immuno will do is run > the pneumo/hib titers. However, after that, I'm not clear. I've seen > (anecdotally) that a lot of people get treatment with numbers comparable to > my son's, and a lot of people with much lower numbers, and a lot of things > which say it all hinges on the pneumo titers. Every time I think I know > something, I find something else that contradicts it. I have a pretty clear > idea what happens if he has no pneumo response. I don't understand what it > would mean to have repeat pneumonia and low IgG numbers and yet make a > normal vaccine response. I realize I am getting ahead of myself, but as I'm > sure you all know, it is very hard to just wait. I am terrified he will get > pneumonia again and have permanent lung damage. > > I know you're not doctors but any thoughts on what I can expect or > interpretation of the numbers or what I should be thinking about for this > upcoming appointment would be appreciated. > > If you made it this far, thank you for reading. > Sara > > > -- www.MothertoMotherDoula.com " Birth is not only about making babies. Birth is about making mothers ~ strong, competent, capable mothers who trust themselves and know their inner strength. " - Barbara Katz Rothman Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 25, 2011 Report Share Posted October 25, 2011 Sara, I do not have answers to your questions as I share your questions and confusion. In so many ways, I identify with your story. My daughter who is 3 is sick constantly. She has been diagnosed with pneumonia multiples times, pansinusitis as well as the " run of the mill " strep, bacterial tonsillitis and ear infection. We will be looking at DTaP titers in a couple of weeks and a few other things I think. At last check her numbers were barely normal or near normal - though 4 months ago her levels were pretty bad. I am still learning so much. So here is my advice: Listen to your gut. In my (humble) opinion, this field of immunology is still in its infancy. There is a lot they know but even more that they do not know yet or that does not have a name on it. By my daughter's labs (at the moment) she should not be sick as frequently as she is. - Since July 1 of this year she has been on an antibiotic for about 15 weeks total and has not got more than 8 days without getting sick while on an antibiotic. So, keep asking questions, listen to your instincts. Sorry I couldn't give you more definitive answers. On Tue, Oct 25, 2011 at 1:32 PM, little.sara@... < little.sara@...> wrote: > ** > > > Hi- > > I'm Sara, mom to who is 5 and 1/2. I'm honestly surprised to be > here...immune issues were nowhere on my radar. My husband is active duty > military and is our third child. The short version is, he's now had > pneumonia 3 times in 6 months, prompting immune testing which came back with > low IgA and total IgG. > > Here is the longer version... (I posted this elsewhere, sorry if it is > duplicate for anyone. My questions are at the bottom if you want to skip > this part.) The pediatrician flagged him at 12 months for growth monitoring, > after he had rotavirus, lost weight, and failed to regain it in a 3 month > period. Then we moved to China and spent two years with erratic medical > care. His growth has always been borderline and I asked about it and was > always dismissed. We moved back here (to Virginia) when he was 3 and again > have the same pediatrician we had when he was a baby. (I love this doctor!) > was still very much smaller than his siblings, but seemed to be doing > well other than continuing intermittent GI stuff, so I didn't press it. > Developmentally he is great. He's had the usual childhood illnesses but I > didn't think anything too extraordinary or frequent ....a couple weird > things (MRSA as a newborn, a weird abscess at 3) and one LONG stretch of > repeat ear infections at 3 - 4.......in between, he was fine and we > certainly never thought of him as " always sick " or anything like that. > Though we did always comment that it takes him a long time to recover from > illness. Finally, although still small, he had a BMI in the 65th percentile > at 4 and I quit worrying about the GI stuff. > > Then last year in March he had a routine checkup and we found his weight > was a lot lower than we thought. We put him on pediasure but my ped. didn't > seem to think much of it. End of March he got pneumonia and strep. His GI > issues got worse- constant diarrhea through June despite probiotics. > Pneumonia and an ear infection in June. He had to go on a second antibiotic > that time, after the first one had no effect. By June his BMI was in the 3rd > percentile and he was referred to GI and screened for celiac (neg). GI at > Walter was an unhelpful jerk. The diarrhea continued. In July > weighed less than he had a year prior (he still does!). We saw pediatric > nutrition at Bethesda. His diet is good. My husband demanded a second > opinion from GI. (still haven't had that appointment) In Sept, pneumonia > again, along with an ear infection. This time he also needed a second > antibiotic. Ped.found this third pneumonia very alarming and insisted on an > xray this time which confirmed it. We went for CF screening at > Bethesda...that was very negative. They also evaluated him for asthma and > found nothing to really indicate asthma in his history. (I do have another > child with asthma but he is very different from , allergies and all that > which has never had.) So then we did the immune screening. Pulmonary at > Bethesda told me not to bother, but again my pediatrician insisted. (I love > him) To my great surprise, the numbers are low: total IgG is 434 and IgA 33. > IgM was normal, and he ran a tetanus titer which was also normal. He did not > run the pneumo/hib titers. > > We have an immunologist appointment on Nov. 9th. Meanwhile, my son has been > sick again... after two bad weeks, diagnosed last week with a sinus > infection. He's back on antibiotics and just today I notice he is looking > really perky, which I haven't seen in a long time. He is still alarmingly > thin, but his energy level is good. I'm a lot more comfortable sending him > to kindergarten with those antibiotics on board. This whole thing has me > jittery. > > I've done a lot of reading ..most kids still seem overtly sicker than mine > prior to this kind of diagnosis...although he has been sick enough for the > last 7 months, I guess. I expect the first thing the immuno will do is run > the pneumo/hib titers. However, after that, I'm not clear. I've seen > (anecdotally) that a lot of people get treatment with numbers comparable to > my son's, and a lot of people with much lower numbers, and a lot of things > which say it all hinges on the pneumo titers. Every time I think I know > something, I find something else that contradicts it. I have a pretty clear > idea what happens if he has no pneumo response. I don't understand what it > would mean to have repeat pneumonia and low IgG numbers and yet make a > normal vaccine response. I realize I am getting ahead of myself, but as I'm > sure you all know, it is very hard to just wait. I am terrified he will get > pneumonia again and have permanent lung damage. > > I know you're not doctors but any thoughts on what I can expect or > interpretation of the numbers or what I should be thinking about for this > upcoming appointment would be appreciated. > > If you made it this far, thank you for reading. > Sara > > > -- www.MothertoMotherDoula.com " Birth is not only about making babies. Birth is about making mothers ~ strong, competent, capable mothers who trust themselves and know their inner strength. " - Barbara Katz Rothman Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 25, 2011 Report Share Posted October 25, 2011 I am fairly new to this group as well. This is a fantastic group and there are several parents that have been and are where you are (me included). They have a tremendous amount of knowledge and information to share. My son is 4 now... had pnem 3 times by the age of 2, ulcerated colitis, C-diff, etc... tons of sinus infections, ear infections, he got the rotovirus from the vaccine, he wasn't " thriving " he was in the low percentile for his growth and weight. He always took twice as long to get over a sickness as my other son and other kids. This boy was sick. His wonderful pediatrician finally said are you ready to go to the Childrens hospital (2 hours away) and go to an immunologiest. He needs tested. He had just been down there for his GI issues.... When my husband and I were done with that meeting with the immunologiest it seemed that the immunologiest thought we were wasting his time and that we were way off base and nothing was wrong with our son... I had a hard time pinpointing all the times he was sick (although looking back it was alot, I was probably in the Dr's office anywhere from once month to 5 times a month) but as time passed I forgot all those appts... especiallly when things were going well. Well, the immunologiest did what we needed him to do, take the necessary blood tests. My pediatrician said to tell the immunologist that our son got the rotovirus from the vaccine.... the immunologiest argued the fact that he probably didn't get the rotovirus from the vaccine and said a whole bunch of statistical crap that I totally didn't believe because I lived it, (funny (not really) he got the shot in the morning and by 5 pm i was back in the dr's office with a sick kid..) Well back on track ~ a week and a half after seeing the immunologiest -> I was sitting in the childrens hospital with my son because he was sick again and needed his blood tested - the immunologiest came to see us and said - that is one sick boy laying right there, he is in a lot of pain. We didn't even understand the scope of his disease for a while. My son lived with this since he was born and was pretty much sick all his life he didn't really know different...he didn't know what feeling good felt like. It was hard as a parent to truely know when he didn't feel good such as joints not feeling well, headaches, stomach aches, etc... It is hard for a parent to know those things because your child is too young to communicate them to you. He has Brutons x-linked aggammaglobulonemia (xla for short). He has very low IgA, IgM and no IgG. He is now being infused every 4 weeks for a year and a half now, his last " trough " level of IgG was in the 700's... YEAH! that is great for him because it was ranging 400-600 over the past year. He have only been hospitalized once for 3 days in that time for pnem. Before we would definitely be in the hospital for 6 days (even for dehydration-flu). He still gets little bits of sick here and there, expected, we have a child that goes to school and brings home stuff... but our world is so different - it is a huge turn around. We start breathing treatments (albuterol) as soon as we hear a cough and the other pediatrician in our dr's office told us to give him treatments 2X a day through the winter to hopefully be able to stay out of the dr's office for those issues. I agree, go with your gut and find out everything you can. The more informed you are the better off he will be. As my pediatrician said, you are his best advocate. The BEST thing i did was took some advise from someone that said, keep a journal of his medical situations (labs, dr visits, etc.) It will really help you and your dr's. I wish I would have done that in the beginning, but it is never to late to start. Also, join some of the foundations - The Primary Immune Foundation and there are many more that if you call them they will send you out information packets. PS, my pediatrician said that my sons immunologiest is on the board that " recertifies " dr's in our state... guess what one question is on their test - if your patient received the rotovirus vaccine and they become ill with the rotovirus what might you consider as the underlying problem. (I didn't memorize the exact words the pediatician said, i paraphrased, but this is the basic gist of it)... of course, one of the answers is a primary immune issue. Good luck and keep asking questions. Terri, Mother to , 4 with XLA > > From: sarah0248@... > Date: Tue, 25 Oct 2011 13:45:43 -0500 > Subject: Re: new- introduction > > Sara, > I do not have answers to your questions as I share your questions and > confusion. In so many ways, I identify with your story. My daughter who is > 3 is sick constantly. She has been diagnosed with pneumonia multiples > times, pansinusitis as well as the " run of the mill " strep, bacterial > tonsillitis and ear infection. We will be looking at DTaP titers in a > couple of weeks and a few other things I think. At last check her numbers > were barely normal or near normal - though 4 months ago her levels were > pretty bad. I am still learning so much. > > So here is my advice: Listen to your gut. In my (humble) opinion, this > field of immunology is still in its infancy. There is a lot they know but > even more that they do not know yet or that does not have a name on it. By > my daughter's labs (at the moment) she should not be sick as frequently as > she is. - Since July 1 of this year she has been on an antibiotic for about > 15 weeks total and has not got more than 8 days without getting sick while > on an antibiotic. So, keep asking questions, listen to your instincts. > > Sorry I couldn't give you more definitive answers. > > > On Tue, Oct 25, 2011 at 1:32 PM, little.sara@... < > little.sara@...> wrote: > > > ** > > > > > > Hi- > > > > I'm Sara, mom to who is 5 and 1/2. I'm honestly surprised to be > > here...immune issues were nowhere on my radar. My husband is active duty > > military and is our third child. The short version is, he's now had > > pneumonia 3 times in 6 months, prompting immune testing which came back with > > low IgA and total IgG. > > > > Here is the longer version... (I posted this elsewhere, sorry if it is > > duplicate for anyone. My questions are at the bottom if you want to skip > > this part.) The pediatrician flagged him at 12 months for growth monitoring, > > after he had rotavirus, lost weight, and failed to regain it in a 3 month > > period. Then we moved to China and spent two years with erratic medical > > care. His growth has always been borderline and I asked about it and was > > always dismissed. We moved back here (to Virginia) when he was 3 and again > > have the same pediatrician we had when he was a baby. (I love this doctor!) > > was still very much smaller than his siblings, but seemed to be doing > > well other than continuing intermittent GI stuff, so I didn't press it. > > Developmentally he is great. He's had the usual childhood illnesses but I > > didn't think anything too extraordinary or frequent ....a couple weird > > things (MRSA as a newborn, a weird abscess at 3) and one LONG stretch of > > repeat ear infections at 3 - 4.......in between, he was fine and we > > certainly never thought of him as " always sick " or anything like that. > > Though we did always comment that it takes him a long time to recover from > > illness. Finally, although still small, he had a BMI in the 65th percentile > > at 4 and I quit worrying about the GI stuff. > > > > Then last year in March he had a routine checkup and we found his weight > > was a lot lower than we thought. We put him on pediasure but my ped. didn't > > seem to think much of it. End of March he got pneumonia and strep. His GI > > issues got worse- constant diarrhea through June despite probiotics. > > Pneumonia and an ear infection in June. He had to go on a second antibiotic > > that time, after the first one had no effect. By June his BMI was in the 3rd > > percentile and he was referred to GI and screened for celiac (neg). GI at > > Walter was an unhelpful jerk. The diarrhea continued. In July > > weighed less than he had a year prior (he still does!). We saw pediatric > > nutrition at Bethesda. His diet is good. My husband demanded a second > > opinion from GI. (still haven't had that appointment) In Sept, pneumonia > > again, along with an ear infection. This time he also needed a second > > antibiotic. Ped.found this third pneumonia very alarming and insisted on an > > xray this time which confirmed it. We went for CF screening at > > Bethesda...that was very negative. They also evaluated him for asthma and > > found nothing to really indicate asthma in his history. (I do have another > > child with asthma but he is very different from , allergies and all that > > which has never had.) So then we did the immune screening. Pulmonary at > > Bethesda told me not to bother, but again my pediatrician insisted. (I love > > him) To my great surprise, the numbers are low: total IgG is 434 and IgA 33. > > IgM was normal, and he ran a tetanus titer which was also normal. He did not > > run the pneumo/hib titers. > > > > We have an immunologist appointment on Nov. 9th. Meanwhile, my son has been > > sick again... after two bad weeks, diagnosed last week with a sinus > > infection. He's back on antibiotics and just today I notice he is looking > > really perky, which I haven't seen in a long time. He is still alarmingly > > thin, but his energy level is good. I'm a lot more comfortable sending him > > to kindergarten with those antibiotics on board. This whole thing has me > > jittery. > > > > I've done a lot of reading ..most kids still seem overtly sicker than mine > > prior to this kind of diagnosis...although he has been sick enough for the > > last 7 months, I guess. I expect the first thing the immuno will do is run > > the pneumo/hib titers. However, after that, I'm not clear. I've seen > > (anecdotally) that a lot of people get treatment with numbers comparable to > > my son's, and a lot of people with much lower numbers, and a lot of things > > which say it all hinges on the pneumo titers. Every time I think I know > > something, I find something else that contradicts it. I have a pretty clear > > idea what happens if he has no pneumo response. I don't understand what it > > would mean to have repeat pneumonia and low IgG numbers and yet make a > > normal vaccine response. I realize I am getting ahead of myself, but as I'm > > sure you all know, it is very hard to just wait. I am terrified he will get > > pneumonia again and have permanent lung damage. > > > > I know you're not doctors but any thoughts on what I can expect or > > interpretation of the numbers or what I should be thinking about for this > > upcoming appointment would be appreciated. > > > > If you made it this far, thank you for reading. > > Sara > > > > > > > > > > -- > www.MothertoMotherDoula.com > > " Birth is not only about making babies. Birth is about making mothers ~ > strong, competent, capable mothers who trust themselves and know their inner > strength. " > - Barbara Katz Rothman > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 25, 2011 Report Share Posted October 25, 2011 I am fairly new to this group as well. This is a fantastic group and there are several parents that have been and are where you are (me included). They have a tremendous amount of knowledge and information to share. My son is 4 now... had pnem 3 times by the age of 2, ulcerated colitis, C-diff, etc... tons of sinus infections, ear infections, he got the rotovirus from the vaccine, he wasn't " thriving " he was in the low percentile for his growth and weight. He always took twice as long to get over a sickness as my other son and other kids. This boy was sick. His wonderful pediatrician finally said are you ready to go to the Childrens hospital (2 hours away) and go to an immunologiest. He needs tested. He had just been down there for his GI issues.... When my husband and I were done with that meeting with the immunologiest it seemed that the immunologiest thought we were wasting his time and that we were way off base and nothing was wrong with our son... I had a hard time pinpointing all the times he was sick (although looking back it was alot, I was probably in the Dr's office anywhere from once month to 5 times a month) but as time passed I forgot all those appts... especiallly when things were going well. Well, the immunologiest did what we needed him to do, take the necessary blood tests. My pediatrician said to tell the immunologist that our son got the rotovirus from the vaccine.... the immunologiest argued the fact that he probably didn't get the rotovirus from the vaccine and said a whole bunch of statistical crap that I totally didn't believe because I lived it, (funny (not really) he got the shot in the morning and by 5 pm i was back in the dr's office with a sick kid..) Well back on track ~ a week and a half after seeing the immunologiest -> I was sitting in the childrens hospital with my son because he was sick again and needed his blood tested - the immunologiest came to see us and said - that is one sick boy laying right there, he is in a lot of pain. We didn't even understand the scope of his disease for a while. My son lived with this since he was born and was pretty much sick all his life he didn't really know different...he didn't know what feeling good felt like. It was hard as a parent to truely know when he didn't feel good such as joints not feeling well, headaches, stomach aches, etc... It is hard for a parent to know those things because your child is too young to communicate them to you. He has Brutons x-linked aggammaglobulonemia (xla for short). He has very low IgA, IgM and no IgG. He is now being infused every 4 weeks for a year and a half now, his last " trough " level of IgG was in the 700's... YEAH! that is great for him because it was ranging 400-600 over the past year. He have only been hospitalized once for 3 days in that time for pnem. Before we would definitely be in the hospital for 6 days (even for dehydration-flu). He still gets little bits of sick here and there, expected, we have a child that goes to school and brings home stuff... but our world is so different - it is a huge turn around. We start breathing treatments (albuterol) as soon as we hear a cough and the other pediatrician in our dr's office told us to give him treatments 2X a day through the winter to hopefully be able to stay out of the dr's office for those issues. I agree, go with your gut and find out everything you can. The more informed you are the better off he will be. As my pediatrician said, you are his best advocate. The BEST thing i did was took some advise from someone that said, keep a journal of his medical situations (labs, dr visits, etc.) It will really help you and your dr's. I wish I would have done that in the beginning, but it is never to late to start. Also, join some of the foundations - The Primary Immune Foundation and there are many more that if you call them they will send you out information packets. PS, my pediatrician said that my sons immunologiest is on the board that " recertifies " dr's in our state... guess what one question is on their test - if your patient received the rotovirus vaccine and they become ill with the rotovirus what might you consider as the underlying problem. (I didn't memorize the exact words the pediatician said, i paraphrased, but this is the basic gist of it)... of course, one of the answers is a primary immune issue. Good luck and keep asking questions. Terri, Mother to , 4 with XLA > > From: sarah0248@... > Date: Tue, 25 Oct 2011 13:45:43 -0500 > Subject: Re: new- introduction > > Sara, > I do not have answers to your questions as I share your questions and > confusion. In so many ways, I identify with your story. My daughter who is > 3 is sick constantly. She has been diagnosed with pneumonia multiples > times, pansinusitis as well as the " run of the mill " strep, bacterial > tonsillitis and ear infection. We will be looking at DTaP titers in a > couple of weeks and a few other things I think. At last check her numbers > were barely normal or near normal - though 4 months ago her levels were > pretty bad. I am still learning so much. > > So here is my advice: Listen to your gut. In my (humble) opinion, this > field of immunology is still in its infancy. There is a lot they know but > even more that they do not know yet or that does not have a name on it. By > my daughter's labs (at the moment) she should not be sick as frequently as > she is. - Since July 1 of this year she has been on an antibiotic for about > 15 weeks total and has not got more than 8 days without getting sick while > on an antibiotic. So, keep asking questions, listen to your instincts. > > Sorry I couldn't give you more definitive answers. > > > On Tue, Oct 25, 2011 at 1:32 PM, little.sara@... < > little.sara@...> wrote: > > > ** > > > > > > Hi- > > > > I'm Sara, mom to who is 5 and 1/2. I'm honestly surprised to be > > here...immune issues were nowhere on my radar. My husband is active duty > > military and is our third child. The short version is, he's now had > > pneumonia 3 times in 6 months, prompting immune testing which came back with > > low IgA and total IgG. > > > > Here is the longer version... (I posted this elsewhere, sorry if it is > > duplicate for anyone. My questions are at the bottom if you want to skip > > this part.) The pediatrician flagged him at 12 months for growth monitoring, > > after he had rotavirus, lost weight, and failed to regain it in a 3 month > > period. Then we moved to China and spent two years with erratic medical > > care. His growth has always been borderline and I asked about it and was > > always dismissed. We moved back here (to Virginia) when he was 3 and again > > have the same pediatrician we had when he was a baby. (I love this doctor!) > > was still very much smaller than his siblings, but seemed to be doing > > well other than continuing intermittent GI stuff, so I didn't press it. > > Developmentally he is great. He's had the usual childhood illnesses but I > > didn't think anything too extraordinary or frequent ....a couple weird > > things (MRSA as a newborn, a weird abscess at 3) and one LONG stretch of > > repeat ear infections at 3 - 4.......in between, he was fine and we > > certainly never thought of him as " always sick " or anything like that. > > Though we did always comment that it takes him a long time to recover from > > illness. Finally, although still small, he had a BMI in the 65th percentile > > at 4 and I quit worrying about the GI stuff. > > > > Then last year in March he had a routine checkup and we found his weight > > was a lot lower than we thought. We put him on pediasure but my ped. didn't > > seem to think much of it. End of March he got pneumonia and strep. His GI > > issues got worse- constant diarrhea through June despite probiotics. > > Pneumonia and an ear infection in June. He had to go on a second antibiotic > > that time, after the first one had no effect. By June his BMI was in the 3rd > > percentile and he was referred to GI and screened for celiac (neg). GI at > > Walter was an unhelpful jerk. The diarrhea continued. In July > > weighed less than he had a year prior (he still does!). We saw pediatric > > nutrition at Bethesda. His diet is good. My husband demanded a second > > opinion from GI. (still haven't had that appointment) In Sept, pneumonia > > again, along with an ear infection. This time he also needed a second > > antibiotic. Ped.found this third pneumonia very alarming and insisted on an > > xray this time which confirmed it. We went for CF screening at > > Bethesda...that was very negative. They also evaluated him for asthma and > > found nothing to really indicate asthma in his history. (I do have another > > child with asthma but he is very different from , allergies and all that > > which has never had.) So then we did the immune screening. Pulmonary at > > Bethesda told me not to bother, but again my pediatrician insisted. (I love > > him) To my great surprise, the numbers are low: total IgG is 434 and IgA 33. > > IgM was normal, and he ran a tetanus titer which was also normal. He did not > > run the pneumo/hib titers. > > > > We have an immunologist appointment on Nov. 9th. Meanwhile, my son has been > > sick again... after two bad weeks, diagnosed last week with a sinus > > infection. He's back on antibiotics and just today I notice he is looking > > really perky, which I haven't seen in a long time. He is still alarmingly > > thin, but his energy level is good. I'm a lot more comfortable sending him > > to kindergarten with those antibiotics on board. This whole thing has me > > jittery. > > > > I've done a lot of reading ..most kids still seem overtly sicker than mine > > prior to this kind of diagnosis...although he has been sick enough for the > > last 7 months, I guess. I expect the first thing the immuno will do is run > > the pneumo/hib titers. However, after that, I'm not clear. I've seen > > (anecdotally) that a lot of people get treatment with numbers comparable to > > my son's, and a lot of people with much lower numbers, and a lot of things > > which say it all hinges on the pneumo titers. Every time I think I know > > something, I find something else that contradicts it. I have a pretty clear > > idea what happens if he has no pneumo response. I don't understand what it > > would mean to have repeat pneumonia and low IgG numbers and yet make a > > normal vaccine response. I realize I am getting ahead of myself, but as I'm > > sure you all know, it is very hard to just wait. I am terrified he will get > > pneumonia again and have permanent lung damage. > > > > I know you're not doctors but any thoughts on what I can expect or > > interpretation of the numbers or what I should be thinking about for this > > upcoming appointment would be appreciated. > > > > If you made it this far, thank you for reading. > > Sara > > > > > > > > > > -- > www.MothertoMotherDoula.com > > " Birth is not only about making babies. Birth is about making mothers ~ > strong, competent, capable mothers who trust themselves and know their inner > strength. " > - Barbara Katz Rothman > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 25, 2011 Report Share Posted October 25, 2011 Sara, it seems like possibly Immunoglobulin replacement therapy (IVIG or SubQIg) may be in the future...it's a really good thing....esp with his low #'s and illnesses......I was apprehensive when this came to be a necessity for my son, but he's healthier now, immunity-wise, and it really helps. My son was on Gamunex IVIG now on Hizentra. Re the growth....remember this (what my son's immunologist told us)....when the body is sick and fighting invading organisms, it's difficult for normal growth to occur....this happened with my son.....ill so often that his growth plates closed at age 14 1/2 with his permanent adult height now set in stone..... at barely 5 feet..... Good luck as ya'll proceed on your journey of finding out what's happened with his immune system and how to manage it....and if they order IVIG....you'll find that your lives will change for the better....hugs, Sue From: little.sara@... <little.sara@...> Subject: new- introduction Date: Tuesday, October 25, 2011, 6:32 PM  Hi- I'm Sara, mom to who is 5 and 1/2. I'm honestly surprised to be here...immune issues were nowhere on my radar. My husband is active duty military and is our third child. The short version is, he's now had pneumonia 3 times in 6 months, prompting immune testing which came back with low IgA and total IgG. Here is the longer version... (I posted this elsewhere, sorry if it is duplicate for anyone. My questions are at the bottom if you want to skip this part.) The pediatrician flagged him at 12 months for growth monitoring, after he had rotavirus, lost weight, and failed to regain it in a 3 month period. Then we moved to China and spent two years with erratic medical care. His growth has always been borderline and I asked about it and was always dismissed. We moved back here (to Virginia) when he was 3 and again have the same pediatrician we had when he was a baby. (I love this doctor!) was still very much smaller than his siblings, but seemed to be doing well other than continuing intermittent GI stuff, so I didn't press it. Developmentally he is great. He's had the usual childhood illnesses but I didn't think anything too extraordinary or frequent ....a couple weird things (MRSA as a newborn, a weird abscess at 3) and one LONG stretch of repeat ear infections at 3 - 4.......in between, he was fine and we certainly never thought of him as " always sick " or anything like that. Though we did always comment that it takes him a long time to recover from illness. Finally, although still small, he had a BMI in the 65th percentile at 4 and I quit worrying about the GI stuff. Then last year in March he had a routine checkup and we found his weight was a lot lower than we thought. We put him on pediasure but my ped. didn't seem to think much of it. End of March he got pneumonia and strep. His GI issues got worse- constant diarrhea through June despite probiotics. Pneumonia and an ear infection in June. He had to go on a second antibiotic that time, after the first one had no effect. By June his BMI was in the 3rd percentile and he was referred to GI and screened for celiac (neg). GI at Walter was an unhelpful jerk. The diarrhea continued. In July weighed less than he had a year prior (he still does!). We saw pediatric nutrition at Bethesda. His diet is good. My husband demanded a second opinion from GI. (still haven't had that appointment) In Sept, pneumonia again, along with an ear infection. This time he also needed a second antibiotic. Ped.found this third pneumonia very alarming and insisted on an xray this time which confirmed it. We went for CF screening at Bethesda...that was very negative. They also evaluated him for asthma and found nothing to really indicate asthma in his history. (I do have another child with asthma but he is very different from , allergies and all that which has never had.) So then we did the immune screening. Pulmonary at Bethesda told me not to bother, but again my pediatrician insisted. (I love him) To my great surprise, the numbers are low: total IgG is 434 and IgA 33. IgM was normal, and he ran a tetanus titer which was also normal. He did not run the pneumo/hib titers. We have an immunologist appointment on Nov. 9th. Meanwhile, my son has been sick again... after two bad weeks, diagnosed last week with a sinus infection. He's back on antibiotics and just today I notice he is looking really perky, which I haven't seen in a long time. He is still alarmingly thin, but his energy level is good. I'm a lot more comfortable sending him to kindergarten with those antibiotics on board. This whole thing has me jittery. I've done a lot of reading ..most kids still seem overtly sicker than mine prior to this kind of diagnosis...although he has been sick enough for the last 7 months, I guess. I expect the first thing the immuno will do is run the pneumo/hib titers. However, after that, I'm not clear. I've seen (anecdotally) that a lot of people get treatment with numbers comparable to my son's, and a lot of people with much lower numbers, and a lot of things which say it all hinges on the pneumo titers. Every time I think I know something, I find something else that contradicts it. I have a pretty clear idea what happens if he has no pneumo response. I don't understand what it would mean to have repeat pneumonia and low IgG numbers and yet make a normal vaccine response. I realize I am getting ahead of myself, but as I'm sure you all know, it is very hard to just wait. I am terrified he will get pneumonia again and have permanent lung damage. I know you're not doctors but any thoughts on what I can expect or interpretation of the numbers or what I should be thinking about for this upcoming appointment would be appreciated. If you made it this far, thank you for reading. Sara Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 25, 2011 Report Share Posted October 25, 2011 Sara, it seems like possibly Immunoglobulin replacement therapy (IVIG or SubQIg) may be in the future...it's a really good thing....esp with his low #'s and illnesses......I was apprehensive when this came to be a necessity for my son, but he's healthier now, immunity-wise, and it really helps. My son was on Gamunex IVIG now on Hizentra. Re the growth....remember this (what my son's immunologist told us)....when the body is sick and fighting invading organisms, it's difficult for normal growth to occur....this happened with my son.....ill so often that his growth plates closed at age 14 1/2 with his permanent adult height now set in stone..... at barely 5 feet..... Good luck as ya'll proceed on your journey of finding out what's happened with his immune system and how to manage it....and if they order IVIG....you'll find that your lives will change for the better....hugs, Sue From: little.sara@... <little.sara@...> Subject: new- introduction Date: Tuesday, October 25, 2011, 6:32 PM  Hi- I'm Sara, mom to who is 5 and 1/2. I'm honestly surprised to be here...immune issues were nowhere on my radar. My husband is active duty military and is our third child. The short version is, he's now had pneumonia 3 times in 6 months, prompting immune testing which came back with low IgA and total IgG. Here is the longer version... (I posted this elsewhere, sorry if it is duplicate for anyone. My questions are at the bottom if you want to skip this part.) The pediatrician flagged him at 12 months for growth monitoring, after he had rotavirus, lost weight, and failed to regain it in a 3 month period. Then we moved to China and spent two years with erratic medical care. His growth has always been borderline and I asked about it and was always dismissed. We moved back here (to Virginia) when he was 3 and again have the same pediatrician we had when he was a baby. (I love this doctor!) was still very much smaller than his siblings, but seemed to be doing well other than continuing intermittent GI stuff, so I didn't press it. Developmentally he is great. He's had the usual childhood illnesses but I didn't think anything too extraordinary or frequent ....a couple weird things (MRSA as a newborn, a weird abscess at 3) and one LONG stretch of repeat ear infections at 3 - 4.......in between, he was fine and we certainly never thought of him as " always sick " or anything like that. Though we did always comment that it takes him a long time to recover from illness. Finally, although still small, he had a BMI in the 65th percentile at 4 and I quit worrying about the GI stuff. Then last year in March he had a routine checkup and we found his weight was a lot lower than we thought. We put him on pediasure but my ped. didn't seem to think much of it. End of March he got pneumonia and strep. His GI issues got worse- constant diarrhea through June despite probiotics. Pneumonia and an ear infection in June. He had to go on a second antibiotic that time, after the first one had no effect. By June his BMI was in the 3rd percentile and he was referred to GI and screened for celiac (neg). GI at Walter was an unhelpful jerk. The diarrhea continued. In July weighed less than he had a year prior (he still does!). We saw pediatric nutrition at Bethesda. His diet is good. My husband demanded a second opinion from GI. (still haven't had that appointment) In Sept, pneumonia again, along with an ear infection. This time he also needed a second antibiotic. Ped.found this third pneumonia very alarming and insisted on an xray this time which confirmed it. We went for CF screening at Bethesda...that was very negative. They also evaluated him for asthma and found nothing to really indicate asthma in his history. (I do have another child with asthma but he is very different from , allergies and all that which has never had.) So then we did the immune screening. Pulmonary at Bethesda told me not to bother, but again my pediatrician insisted. (I love him) To my great surprise, the numbers are low: total IgG is 434 and IgA 33. IgM was normal, and he ran a tetanus titer which was also normal. He did not run the pneumo/hib titers. We have an immunologist appointment on Nov. 9th. Meanwhile, my son has been sick again... after two bad weeks, diagnosed last week with a sinus infection. He's back on antibiotics and just today I notice he is looking really perky, which I haven't seen in a long time. He is still alarmingly thin, but his energy level is good. I'm a lot more comfortable sending him to kindergarten with those antibiotics on board. This whole thing has me jittery. I've done a lot of reading ..most kids still seem overtly sicker than mine prior to this kind of diagnosis...although he has been sick enough for the last 7 months, I guess. I expect the first thing the immuno will do is run the pneumo/hib titers. However, after that, I'm not clear. I've seen (anecdotally) that a lot of people get treatment with numbers comparable to my son's, and a lot of people with much lower numbers, and a lot of things which say it all hinges on the pneumo titers. Every time I think I know something, I find something else that contradicts it. I have a pretty clear idea what happens if he has no pneumo response. I don't understand what it would mean to have repeat pneumonia and low IgG numbers and yet make a normal vaccine response. I realize I am getting ahead of myself, but as I'm sure you all know, it is very hard to just wait. I am terrified he will get pneumonia again and have permanent lung damage. I know you're not doctors but any thoughts on what I can expect or interpretation of the numbers or what I should be thinking about for this upcoming appointment would be appreciated. If you made it this far, thank you for reading. Sara Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 25, 2011 Report Share Posted October 25, 2011 I love your pediatrician, too! Seriously, having a good doctor to recognize symptoms is half the battle. Having pneumonia three times in six months IS serious. My son, 9, is one of those who slipped through the cracks for a long time because he didn't have sepsis...lots of chronic, nagging infections, and unusual things, but nothing " serious " . I homeschooled him because he got sick when he got around others who were sick, and stayed sick for a long time, so keeping him out of public school probably helped him not get too sick. He actually turned out to have a genetic origin to his immune deficiency (he has hypogammaglobulinemia secondary to mitochondrial disease), which we didn't put together until he was diagnosed with low IgG, low IgM, 1.5 years ago. After starting immunoglobulin therapy, my son gained ten pounds! Your son may also grow much better now that his immune deficiency has been identified and will be treated. My son is still short, but that has more to do with his other health issues. He is actually well-proportioned, though. When/If your son starts on IVIG or subQ Ig, you will find some great advice on here--I did Mindy northern Virginia, too! mom to seven special kids > Hi- > > I'm Sara, mom to who is 5 and 1/2. I'm honestly surprised to be > here...immune issues were nowhere on my radar. My husband is active duty > military and is our third child. The short version is, he's now had > pneumonia 3 times in 6 months, prompting immune testing which came back > with low IgA and total IgG. > > Here is the longer version... (I posted this elsewhere, sorry if it is > duplicate for anyone. My questions are at the bottom if you want to skip > this part.) The pediatrician flagged him at 12 months for growth > monitoring, after he had rotavirus, lost weight, and failed to regain it > in a 3 month period. Then we moved to China and spent two years with > erratic medical care. His growth has always been borderline and I asked > about it and was always dismissed. We moved back here (to Virginia) when > he was 3 and again have the same pediatrician we had when he was a baby. > (I love this doctor!) was still very much smaller than his siblings, > but seemed to be doing well other than continuing intermittent GI stuff, > so I didn't press it. Developmentally he is great. He's had the usual > childhood illnesses but I didn't think anything too extraordinary or > frequent ....a couple weird things (MRSA as a newborn, a weird abscess at > 3) and one LONG stretch of repeat ear infections at 3 - 4.......in > between, he was fine and we certainly never thought of him as " always > sick " or anything like that. Though we did always comment that it takes > him a long time to recover from illness. Finally, although still small, > he had a BMI in the 65th percentile at 4 and I quit worrying about the GI > stuff. > > Then last year in March he had a routine checkup and we found his weight > was a lot lower than we thought. We put him on pediasure but my ped. > didn't seem to think much of it. End of March he got pneumonia and strep. > His GI issues got worse- constant diarrhea through June despite > probiotics. Pneumonia and an ear infection in June. He had to go on a > second antibiotic that time, after the first one had no effect. By June > his BMI was in the 3rd percentile and he was referred to GI and screened > for celiac (neg). GI at Walter was an unhelpful jerk. The diarrhea > continued. In July weighed less than he had a year prior (he still > does!). We saw pediatric nutrition at Bethesda. His diet is good. My > husband demanded a second opinion from GI. (still haven't had that > appointment) In Sept, pneumonia again, along with an ear infection. This > time he also needed a second antibiotic. Ped.found this third pneumonia > very alarming and insisted on an xray this time which confirmed it. We > went for CF screening at Bethesda...that was very negative. They also > evaluated him for asthma and found nothing to really indicate asthma in > his history. (I do have another child with asthma but he is very different > from , allergies and all that which has never had.) So then we > did the immune screening. Pulmonary at Bethesda told me not to bother, > but again my pediatrician insisted. (I love him) To my great surprise, the > numbers are low: total IgG is 434 and IgA 33. IgM was normal, and he ran > a tetanus titer which was also normal. He did not run the pneumo/hib > titers. > > We have an immunologist appointment on Nov. 9th. Meanwhile, my son has > been sick again... after two bad weeks, diagnosed last week with a sinus > infection. He's back on antibiotics and just today I notice he is looking > really perky, which I haven't seen in a long time. He is still alarmingly > thin, but his energy level is good. I'm a lot more comfortable sending him > to kindergarten with those antibiotics on board. This whole thing has me > jittery. > > I've done a lot of reading ..most kids still seem overtly sicker than mine > prior to this kind of diagnosis...although he has been sick enough for the > last 7 months, I guess. I expect the first thing the immuno will do is > run the pneumo/hib titers. However, after that, I'm not clear. I've seen > (anecdotally) that a lot of people get treatment with numbers comparable > to my son's, and a lot of people with much lower numbers, and a lot of > things which say it all hinges on the pneumo titers. Every time I think I > know something, I find something else that contradicts it. I have a pretty > clear idea what happens if he has no pneumo response. I don't understand > what it would mean to have repeat pneumonia and low IgG numbers and yet > make a normal vaccine response. I realize I am getting ahead of myself, > but as I'm sure you all know, it is very hard to just wait. I am terrified > he will get pneumonia again and have permanent lung damage. > > I know you're not doctors but any thoughts on what I can expect or > interpretation of the numbers or what I should be thinking about for this > upcoming appointment would be appreciated. > > If you made it this far, thank you for reading. > Sara > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 25, 2011 Report Share Posted October 25, 2011 I love your pediatrician, too! Seriously, having a good doctor to recognize symptoms is half the battle. Having pneumonia three times in six months IS serious. My son, 9, is one of those who slipped through the cracks for a long time because he didn't have sepsis...lots of chronic, nagging infections, and unusual things, but nothing " serious " . I homeschooled him because he got sick when he got around others who were sick, and stayed sick for a long time, so keeping him out of public school probably helped him not get too sick. He actually turned out to have a genetic origin to his immune deficiency (he has hypogammaglobulinemia secondary to mitochondrial disease), which we didn't put together until he was diagnosed with low IgG, low IgM, 1.5 years ago. After starting immunoglobulin therapy, my son gained ten pounds! Your son may also grow much better now that his immune deficiency has been identified and will be treated. My son is still short, but that has more to do with his other health issues. He is actually well-proportioned, though. When/If your son starts on IVIG or subQ Ig, you will find some great advice on here--I did Mindy northern Virginia, too! mom to seven special kids > Hi- > > I'm Sara, mom to who is 5 and 1/2. I'm honestly surprised to be > here...immune issues were nowhere on my radar. My husband is active duty > military and is our third child. The short version is, he's now had > pneumonia 3 times in 6 months, prompting immune testing which came back > with low IgA and total IgG. > > Here is the longer version... (I posted this elsewhere, sorry if it is > duplicate for anyone. My questions are at the bottom if you want to skip > this part.) The pediatrician flagged him at 12 months for growth > monitoring, after he had rotavirus, lost weight, and failed to regain it > in a 3 month period. Then we moved to China and spent two years with > erratic medical care. His growth has always been borderline and I asked > about it and was always dismissed. We moved back here (to Virginia) when > he was 3 and again have the same pediatrician we had when he was a baby. > (I love this doctor!) was still very much smaller than his siblings, > but seemed to be doing well other than continuing intermittent GI stuff, > so I didn't press it. Developmentally he is great. He's had the usual > childhood illnesses but I didn't think anything too extraordinary or > frequent ....a couple weird things (MRSA as a newborn, a weird abscess at > 3) and one LONG stretch of repeat ear infections at 3 - 4.......in > between, he was fine and we certainly never thought of him as " always > sick " or anything like that. Though we did always comment that it takes > him a long time to recover from illness. Finally, although still small, > he had a BMI in the 65th percentile at 4 and I quit worrying about the GI > stuff. > > Then last year in March he had a routine checkup and we found his weight > was a lot lower than we thought. We put him on pediasure but my ped. > didn't seem to think much of it. End of March he got pneumonia and strep. > His GI issues got worse- constant diarrhea through June despite > probiotics. Pneumonia and an ear infection in June. He had to go on a > second antibiotic that time, after the first one had no effect. By June > his BMI was in the 3rd percentile and he was referred to GI and screened > for celiac (neg). GI at Walter was an unhelpful jerk. The diarrhea > continued. In July weighed less than he had a year prior (he still > does!). We saw pediatric nutrition at Bethesda. His diet is good. My > husband demanded a second opinion from GI. (still haven't had that > appointment) In Sept, pneumonia again, along with an ear infection. This > time he also needed a second antibiotic. Ped.found this third pneumonia > very alarming and insisted on an xray this time which confirmed it. We > went for CF screening at Bethesda...that was very negative. They also > evaluated him for asthma and found nothing to really indicate asthma in > his history. (I do have another child with asthma but he is very different > from , allergies and all that which has never had.) So then we > did the immune screening. Pulmonary at Bethesda told me not to bother, > but again my pediatrician insisted. (I love him) To my great surprise, the > numbers are low: total IgG is 434 and IgA 33. IgM was normal, and he ran > a tetanus titer which was also normal. He did not run the pneumo/hib > titers. > > We have an immunologist appointment on Nov. 9th. Meanwhile, my son has > been sick again... after two bad weeks, diagnosed last week with a sinus > infection. He's back on antibiotics and just today I notice he is looking > really perky, which I haven't seen in a long time. He is still alarmingly > thin, but his energy level is good. I'm a lot more comfortable sending him > to kindergarten with those antibiotics on board. This whole thing has me > jittery. > > I've done a lot of reading ..most kids still seem overtly sicker than mine > prior to this kind of diagnosis...although he has been sick enough for the > last 7 months, I guess. I expect the first thing the immuno will do is > run the pneumo/hib titers. However, after that, I'm not clear. I've seen > (anecdotally) that a lot of people get treatment with numbers comparable > to my son's, and a lot of people with much lower numbers, and a lot of > things which say it all hinges on the pneumo titers. Every time I think I > know something, I find something else that contradicts it. I have a pretty > clear idea what happens if he has no pneumo response. I don't understand > what it would mean to have repeat pneumonia and low IgG numbers and yet > make a normal vaccine response. I realize I am getting ahead of myself, > but as I'm sure you all know, it is very hard to just wait. I am terrified > he will get pneumonia again and have permanent lung damage. > > I know you're not doctors but any thoughts on what I can expect or > interpretation of the numbers or what I should be thinking about for this > upcoming appointment would be appreciated. > > If you made it this far, thank you for reading. > Sara > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 26, 2011 Report Share Posted October 26, 2011 Thank you all. Based on the information I have now, it does seem he might be a candidate for IG replacement...but I just don't know. I am torn about that. This is not a diagnosis anyone wants. On the other hand, at this point I really just want my kid to be healthy and gain weight and just thrive. He is doing ok but he is definitely not thriving. I'm still wrapping my head around this thing. We hadn't really connected the GI issues to anything else before - I mean, I always thought if we could manage the GI stuff and he could put on weight and be generally more robust, he would be healthier overall. He is so skinny -no reserves at all- it's not surprising he keeps getting sick. I really thought there was a food issue at the root of it, though admittedly many food elimination trials have shown nothing. Neither was I really too worried about the pneumonia - because I am clueless, I guess- until my pediatrician got so alarmed in September. Even then, I was thinking, 'really? is this really all pneumonia? " Because even when he is apparently really sick, he doesn't seem THAT sick. It can be hard for me to tell sometimes (bad mommy). I end up taking him to the doctor because he seems " off " and excessively tired, only to find he has some real infection (pneumonia, ear infection, sinus). He is cheerful and articulate at the doctor's office which I think masks a lot. Thankfully my ped. clinic is good and they now know him well enough to see the subtle signs. But anyway... when they sent us for CF testing is when I first considered there could be something bigger going on. I didn't think it quite fit, but we had to check. Anyway I ramble. Unfortunately, where I'm going with this is that an underlying immune issue would fit. It would explain absolutely everything. I still wonder if he is 'sick enough' for this diagnosis, having not been more sickly as a younger child. But if this IS the answer, then I want to get on with things as quickly as possible. Does weight matter to Ig levels, does anyone know? Because I know his IgG is low for age, but since his weight is currently less than the 3rd percentile, is that not relevant to his IgG being less than the 3rd percentile also? I need to go drink some coffee. Thank you for 'listening' to me ramble. Sara Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 26, 2011 Report Share Posted October 26, 2011 You probably just need some time to get somewhat comfortable with the diagnosis. It is overwhelming. My first thought when I read your prior email was that your son will need immunoglobulin for the protection of his lungs ( at the very least). One of the major positive outcomes for starting immunoglobulin treatment in young children is the reduction of organ damage. So, delaying the diagnosis is usually not a good thing. But, take the time to ask a lot of questions and see a good immunologist. Sounds like you & #39;ve already got a good start with a great pediatrician! Oh yeah, have u seen the immune deficiency webpage? It & #39;s fabulous. http://primaryimmune.org/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 26, 2011 Report Share Posted October 26, 2011 You probably just need some time to get somewhat comfortable with the diagnosis. It is overwhelming. My first thought when I read your prior email was that your son will need immunoglobulin for the protection of his lungs ( at the very least). One of the major positive outcomes for starting immunoglobulin treatment in young children is the reduction of organ damage. So, delaying the diagnosis is usually not a good thing. But, take the time to ask a lot of questions and see a good immunologist. Sounds like you & #39;ve already got a good start with a great pediatrician! Oh yeah, have u seen the immune deficiency webpage? It & #39;s fabulous. http://primaryimmune.org/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 27, 2011 Report Share Posted October 27, 2011 Sara, I definitely think, after reading your post, your child has been really sick, all of the things you posted, I can definitely relate too!! you don't know how many times Kenzie was tested for all those things you mentioned, anything and everything under the sun!! I will say this, consider yourself lucky they found it now Makenzie is 11 and we went 9 long miserable years before they " figured " her out. I hated having to put the IG in her as well, BUT, she needs it, hers isn't there like ours is, and I had to help my daughter, all the repeated dangerous illnesses can cause permanent damage, so it was imperative that we start the IG right away. Makenzie is doing fabulous and we are so grateful that she has a chance at a " normal " childhood now. Because before, she could go nowhere and do nothing most of the time as she was ALWAYS ill ( Welcome and good luck we chose to do weekly sub q at home as the numbers stay more steady and there are less side effects, actually next to none Kenzie chose this herself. And yes it goes by age, weight, sex and other things, so even though he is small he needs more...I will say alot of our kids tend to be small....Makenzie is 11 years old, only 4 ft 4 and 62 pounds. Makenzie has Asthma, Reflux, Allergies, CVID, GI issues, a hearing loss in her left ear FROM one of her illnesses, it all goes in a circle...and let me tell you they are ALL much more at bay now that she has been doing her IG for 2 years. Makenzie 11 22 --- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 27, 2011 Report Share Posted October 27, 2011 Sara, I definitely think, after reading your post, your child has been really sick, all of the things you posted, I can definitely relate too!! you don't know how many times Kenzie was tested for all those things you mentioned, anything and everything under the sun!! I will say this, consider yourself lucky they found it now Makenzie is 11 and we went 9 long miserable years before they " figured " her out. I hated having to put the IG in her as well, BUT, she needs it, hers isn't there like ours is, and I had to help my daughter, all the repeated dangerous illnesses can cause permanent damage, so it was imperative that we start the IG right away. Makenzie is doing fabulous and we are so grateful that she has a chance at a " normal " childhood now. Because before, she could go nowhere and do nothing most of the time as she was ALWAYS ill ( Welcome and good luck we chose to do weekly sub q at home as the numbers stay more steady and there are less side effects, actually next to none Kenzie chose this herself. And yes it goes by age, weight, sex and other things, so even though he is small he needs more...I will say alot of our kids tend to be small....Makenzie is 11 years old, only 4 ft 4 and 62 pounds. Makenzie has Asthma, Reflux, Allergies, CVID, GI issues, a hearing loss in her left ear FROM one of her illnesses, it all goes in a circle...and let me tell you they are ALL much more at bay now that she has been doing her IG for 2 years. Makenzie 11 22 --- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 27, 2011 Report Share Posted October 27, 2011 Responding to my own email here... I just reread that and want to clarify... I wrote that I thought he might be a candidate for IG...actually I think his numbers are really a gray area. They are low but not abominably so. The pneumonia is less of a gray area, so we'll see what immuno says about it all. I think based on the illness we have to do something, but I expect it will be a while before there is a really clear answer. I do appreciate everyone's thoughts. The waiting is really hard. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 27, 2011 Report Share Posted October 27, 2011 Responding to my own email here... I just reread that and want to clarify... I wrote that I thought he might be a candidate for IG...actually I think his numbers are really a gray area. They are low but not abominably so. The pneumonia is less of a gray area, so we'll see what immuno says about it all. I think based on the illness we have to do something, but I expect it will be a while before there is a really clear answer. I do appreciate everyone's thoughts. The waiting is really hard. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 15, 2011 Report Share Posted November 15, 2011 Hi I just wanted to follow up, mostly for future people who are looking for info like I was. We finally saw immuno, who wanted to do repeat testing and follow my son over the next six months. Well, his repeat IgG came back in the normal range - more than 300 pts higher than before. I have no idea what to think of that, but immuno says the first one may be lab error. I don't think the pneumo titers are in, but that may not matter now. This leaves us back at square one regarding the recurrent pneumonia and GI stuff, but did say that he would like to see my son next time he is sick, *before* he goes on antibiotics. If we end up revisiting this later, I know where to come. Thank you all. Quote Link to comment Share on other sites More sharing options...
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