Guest guest Posted August 12, 2009 Report Share Posted August 12, 2009 has he ever been tested for bacterial overgrowth? You didn't mention if any function studies have been done. While he might have low normal numbers those might be his average and since he's not symptomatic of a PID he might be ok. GI wise he might have something completely different going on. Also Helicobacter Pylori could be happening in his gut. Is he already on infusions? If not then there are simple tests that they can run from bloodwork to check for the H Pylori. The overgrowth is a very simple breath test that can be done at home and sent in. Both are treated aggressively with antibiotics made just for the gut and sometimes resolve. Although both have been known to be difficult to get rid of and have a tendency to come back. Ursula Holleman mom to (16) and Macey (14) www.caringbridge.org/visit/maceyholleman From: stacy171@... Date: Wed, 12 Aug 2009 12:03:15 -0700 Subject: Re: Hi - new here We didn't get a diagnosis until about a year ago (~4yo) and his recent IgG and IgM studies are still low. So, I guess it's not transient? I'm curious why he isn't getting sick still? He seems almost autoimmune now. I haven't done a colonoscopy yet although it's on the list. He's had diarrhea and bloating most of his life. We've finally gotten the diarrhea mostly under control with a strict diet and removal of allergy foods. Did IVIG or other meds help? Thank you for responding! ________________________________ From: Ursula Holleman <uahollem@...> Sent: Wednesday, August 12, 2009 2:41:01 PM Subject: RE: Hi - new here - What were his function studies like? Did he mount sufficient titers to his vaccinations? Transient PID does tend to resolve around 4-5 years old so he might be fortunate enough to have average numbers and stay healthy now. IBD symptoms are seen in PID patients. Variants of Crohn's, UC and Celiac are documented. Fatigue has been a problem with patients either due to anemia of chronic illness or just the disease process taking up so much of the body's energy. Our daughter has dealt with all of the symptoms you describe and is 14 years into her diagnosis. We just try to keep her head above water. She's on IBD steroids right now and has had breakthrough pain and nausea this week so the GI has mentioned repeating her colonoscopy soon. Her last one was less than a year ago. Ursula Holleman mom to (16) and Macey (14) www.caringbridge. org/visit/ maceyholleman groups (DOT) com From: stacy171 (DOT) com Date: Wed, 12 Aug 2009 18:19:55 +0000 Subject: Hi - new here Hi, My son has low total immunoglobin G and low immunoglobin M. We're waiting for the results of the IgG subclasses. He is 5yo. He was significantly sick from 0-3 years old but now he doesn't seem to get sick anymore. Is that common? Instead, he has symptoms of inflammatory bowel disease and significant food allergies/intoleran ces. Do any of your children have this problem too? He also seems more tired than most kids. Is fatigue related to immune deficiency? Thanks for reading, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 12, 2009 Report Share Posted August 12, 2009 has he ever been tested for bacterial overgrowth? You didn't mention if any function studies have been done. While he might have low normal numbers those might be his average and since he's not symptomatic of a PID he might be ok. GI wise he might have something completely different going on. Also Helicobacter Pylori could be happening in his gut. Is he already on infusions? If not then there are simple tests that they can run from bloodwork to check for the H Pylori. The overgrowth is a very simple breath test that can be done at home and sent in. Both are treated aggressively with antibiotics made just for the gut and sometimes resolve. Although both have been known to be difficult to get rid of and have a tendency to come back. Ursula Holleman mom to (16) and Macey (14) www.caringbridge.org/visit/maceyholleman From: stacy171@... Date: Wed, 12 Aug 2009 12:03:15 -0700 Subject: Re: Hi - new here We didn't get a diagnosis until about a year ago (~4yo) and his recent IgG and IgM studies are still low. So, I guess it's not transient? I'm curious why he isn't getting sick still? He seems almost autoimmune now. I haven't done a colonoscopy yet although it's on the list. He's had diarrhea and bloating most of his life. We've finally gotten the diarrhea mostly under control with a strict diet and removal of allergy foods. Did IVIG or other meds help? Thank you for responding! ________________________________ From: Ursula Holleman <uahollem@...> Sent: Wednesday, August 12, 2009 2:41:01 PM Subject: RE: Hi - new here - What were his function studies like? Did he mount sufficient titers to his vaccinations? Transient PID does tend to resolve around 4-5 years old so he might be fortunate enough to have average numbers and stay healthy now. IBD symptoms are seen in PID patients. Variants of Crohn's, UC and Celiac are documented. Fatigue has been a problem with patients either due to anemia of chronic illness or just the disease process taking up so much of the body's energy. Our daughter has dealt with all of the symptoms you describe and is 14 years into her diagnosis. We just try to keep her head above water. She's on IBD steroids right now and has had breakthrough pain and nausea this week so the GI has mentioned repeating her colonoscopy soon. Her last one was less than a year ago. Ursula Holleman mom to (16) and Macey (14) www.caringbridge. org/visit/ maceyholleman groups (DOT) com From: stacy171 (DOT) com Date: Wed, 12 Aug 2009 18:19:55 +0000 Subject: Hi - new here Hi, My son has low total immunoglobin G and low immunoglobin M. We're waiting for the results of the IgG subclasses. He is 5yo. He was significantly sick from 0-3 years old but now he doesn't seem to get sick anymore. Is that common? Instead, he has symptoms of inflammatory bowel disease and significant food allergies/intoleran ces. Do any of your children have this problem too? He also seems more tired than most kids. Is fatigue related to immune deficiency? Thanks for reading, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 12, 2009 Report Share Posted August 12, 2009 sorry, could you explain what you mean by functional studies? His IgG total is in the 300's and his IgM is below 20. Do you mean CBC? ________________________________ From: Ursula Holleman <uahollem@...> Sent: Wednesday, August 12, 2009 2:41:01 PM Subject: RE: Hi - new here  - What were his function studies like? Did he mount sufficient titers to his vaccinations? Transient PID does tend to resolve around 4-5 years old so he might be fortunate enough to have average numbers and stay healthy now. IBD symptoms are seen in PID patients. Variants of Crohn's, UC and Celiac are documented. Fatigue has been a problem with patients either due to anemia of chronic illness or just the disease process taking up so much of the body's energy. Our daughter has dealt with all of the symptoms you describe and is 14 years into her diagnosis. We just try to keep her head above water. She's on IBD steroids right now and has had breakthrough pain and nausea this week so the GI has mentioned repeating her colonoscopy soon. Her last one was less than a year ago. Ursula Holleman mom to (16) and Macey (14) www.caringbridge. org/visit/ maceyholleman groups (DOT) com From: stacy171 (DOT) com Date: Wed, 12 Aug 2009 18:19:55 +0000 Subject: Hi - new here Hi, My son has low total immunoglobin G and low immunoglobin M. We're waiting for the results of the IgG subclasses. He is 5yo. He was significantly sick from 0-3 years old but now he doesn't seem to get sick anymore. Is that common? Instead, he has symptoms of inflammatory bowel disease and significant food allergies/intoleran ces. Do any of your children have this problem too? He also seems more tired than most kids. Is fatigue related to immune deficiency? Thanks for reading, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 12, 2009 Report Share Posted August 12, 2009 sorry, could you explain what you mean by functional studies? His IgG total is in the 300's and his IgM is below 20. Do you mean CBC? ________________________________ From: Ursula Holleman <uahollem@...> Sent: Wednesday, August 12, 2009 2:41:01 PM Subject: RE: Hi - new here  - What were his function studies like? Did he mount sufficient titers to his vaccinations? Transient PID does tend to resolve around 4-5 years old so he might be fortunate enough to have average numbers and stay healthy now. IBD symptoms are seen in PID patients. Variants of Crohn's, UC and Celiac are documented. Fatigue has been a problem with patients either due to anemia of chronic illness or just the disease process taking up so much of the body's energy. Our daughter has dealt with all of the symptoms you describe and is 14 years into her diagnosis. We just try to keep her head above water. She's on IBD steroids right now and has had breakthrough pain and nausea this week so the GI has mentioned repeating her colonoscopy soon. Her last one was less than a year ago. Ursula Holleman mom to (16) and Macey (14) www.caringbridge. org/visit/ maceyholleman groups (DOT) com From: stacy171 (DOT) com Date: Wed, 12 Aug 2009 18:19:55 +0000 Subject: Hi - new here Hi, My son has low total immunoglobin G and low immunoglobin M. We're waiting for the results of the IgG subclasses. He is 5yo. He was significantly sick from 0-3 years old but now he doesn't seem to get sick anymore. Is that common? Instead, he has symptoms of inflammatory bowel disease and significant food allergies/intoleran ces. Do any of your children have this problem too? He also seems more tired than most kids. Is fatigue related to immune deficiency? Thanks for reading, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 12, 2009 Report Share Posted August 12, 2009 They should have tested his response to his childhood vaccinations. The antibody levels mounted to his Prevnar, HiB, DtP and MMR vaccinations. This can tell you whether or not what little numbers of IgG he does have work at all. It might be that he has low numbers but they have strong function. Some patients have good IgG numbers but the function of those IgG is zilch. My husband is such a patient. He is diagnosed with CVID. He has an IgG of 800 but no function. Those IgG are useless. They pack no punch. Ursula Holleman mom to (16) and Macey (14) www.caringbridge.org/visit/maceyholleman From: stacy171@... Date: Wed, 12 Aug 2009 13:25:54 -0700 Subject: Re: Hi - new here sorry, could you explain what you mean by functional studies? His IgG total is in the 300's and his IgM is below 20. Do you mean CBC? ________________________________ From: Ursula Holleman <uahollem@...> Sent: Wednesday, August 12, 2009 2:41:01 PM Subject: RE: Hi - new here - What were his function studies like? Did he mount sufficient titers to his vaccinations? Transient PID does tend to resolve around 4-5 years old so he might be fortunate enough to have average numbers and stay healthy now. IBD symptoms are seen in PID patients. Variants of Crohn's, UC and Celiac are documented. Fatigue has been a problem with patients either due to anemia of chronic illness or just the disease process taking up so much of the body's energy. Our daughter has dealt with all of the symptoms you describe and is 14 years into her diagnosis. We just try to keep her head above water. She's on IBD steroids right now and has had breakthrough pain and nausea this week so the GI has mentioned repeating her colonoscopy soon. Her last one was less than a year ago. Ursula Holleman mom to (16) and Macey (14) www.caringbridge. org/visit/ maceyholleman groups (DOT) com From: stacy171 (DOT) com Date: Wed, 12 Aug 2009 18:19:55 +0000 Subject: Hi - new here Hi, My son has low total immunoglobin G and low immunoglobin M. We're waiting for the results of the IgG subclasses. He is 5yo. He was significantly sick from 0-3 years old but now he doesn't seem to get sick anymore. Is that common? Instead, he has symptoms of inflammatory bowel disease and significant food allergies/intoleran ces. Do any of your children have this problem too? He also seems more tired than most kids. Is fatigue related to immune deficiency? Thanks for reading, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 12, 2009 Report Share Posted August 12, 2009 They should have tested his response to his childhood vaccinations. The antibody levels mounted to his Prevnar, HiB, DtP and MMR vaccinations. This can tell you whether or not what little numbers of IgG he does have work at all. It might be that he has low numbers but they have strong function. Some patients have good IgG numbers but the function of those IgG is zilch. My husband is such a patient. He is diagnosed with CVID. He has an IgG of 800 but no function. Those IgG are useless. They pack no punch. Ursula Holleman mom to (16) and Macey (14) www.caringbridge.org/visit/maceyholleman From: stacy171@... Date: Wed, 12 Aug 2009 13:25:54 -0700 Subject: Re: Hi - new here sorry, could you explain what you mean by functional studies? His IgG total is in the 300's and his IgM is below 20. Do you mean CBC? ________________________________ From: Ursula Holleman <uahollem@...> Sent: Wednesday, August 12, 2009 2:41:01 PM Subject: RE: Hi - new here - What were his function studies like? Did he mount sufficient titers to his vaccinations? Transient PID does tend to resolve around 4-5 years old so he might be fortunate enough to have average numbers and stay healthy now. IBD symptoms are seen in PID patients. Variants of Crohn's, UC and Celiac are documented. Fatigue has been a problem with patients either due to anemia of chronic illness or just the disease process taking up so much of the body's energy. Our daughter has dealt with all of the symptoms you describe and is 14 years into her diagnosis. We just try to keep her head above water. She's on IBD steroids right now and has had breakthrough pain and nausea this week so the GI has mentioned repeating her colonoscopy soon. Her last one was less than a year ago. Ursula Holleman mom to (16) and Macey (14) www.caringbridge. org/visit/ maceyholleman groups (DOT) com From: stacy171 (DOT) com Date: Wed, 12 Aug 2009 18:19:55 +0000 Subject: Hi - new here Hi, My son has low total immunoglobin G and low immunoglobin M. We're waiting for the results of the IgG subclasses. He is 5yo. He was significantly sick from 0-3 years old but now he doesn't seem to get sick anymore. Is that common? Instead, he has symptoms of inflammatory bowel disease and significant food allergies/intoleran ces. Do any of your children have this problem too? He also seems more tired than most kids. Is fatigue related to immune deficiency? Thanks for reading, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 12, 2009 Report Share Posted August 12, 2009 Gotcha - we chose not to have him repeat immunized (he has a history of reaction after a vaccine). They did measure some of his old titers and they were very low or zero. I now understand what you mean about having a low level but still being functional. Thanks! ________________________________ From: Ursula Holleman <uahollem@...> Sent: Wednesday, August 12, 2009 5:12:26 PM Subject: RE: Hi - new here  They should have tested his response to his childhood vaccinations. The antibody levels mounted to his Prevnar, HiB, DtP and MMR vaccinations. This can tell you whether or not what little numbers of IgG he does have work at all. It might be that he has low numbers but they have strong function. Some patients have good IgG numbers but the function of those IgG is zilch. My husband is such a patient. He is diagnosed with CVID. He has an IgG of 800 but no function. Those IgG are useless. They pack no punch. Ursula Holleman mom to (16) and Macey (14) www.caringbridge. org/visit/ maceyholleman groups (DOT) com From: stacy171 (DOT) com Date: Wed, 12 Aug 2009 13:25:54 -0700 Subject: Re: Hi - new here sorry, could you explain what you mean by functional studies? His IgG total is in the 300's and his IgM is below 20. Do you mean CBC? ____________ _________ _________ __ From: Ursula Holleman <uahollemmsn (DOT) com> groups (DOT) com Sent: Wednesday, August 12, 2009 2:41:01 PM Subject: RE: Hi - new here - What were his function studies like? Did he mount sufficient titers to his vaccinations? Transient PID does tend to resolve around 4-5 years old so he might be fortunate enough to have average numbers and stay healthy now. IBD symptoms are seen in PID patients. Variants of Crohn's, UC and Celiac are documented. Fatigue has been a problem with patients either due to anemia of chronic illness or just the disease process taking up so much of the body's energy. Our daughter has dealt with all of the symptoms you describe and is 14 years into her diagnosis. We just try to keep her head above water. She's on IBD steroids right now and has had breakthrough pain and nausea this week so the GI has mentioned repeating her colonoscopy soon. Her last one was less than a year ago. Ursula Holleman mom to (16) and Macey (14) www.caringbridge. org/visit/ maceyholleman groups (DOT) com From: stacy171 (DOT) com Date: Wed, 12 Aug 2009 18:19:55 +0000 Subject: Hi - new here Hi, My son has low total immunoglobin G and low immunoglobin M. We're waiting for the results of the IgG subclasses. He is 5yo. He was significantly sick from 0-3 years old but now he doesn't seem to get sick anymore. Is that common? Instead, he has symptoms of inflammatory bowel disease and significant food allergies/intoleran ces. Do any of your children have this problem too? He also seems more tired than most kids. Is fatigue related to immune deficiency? Thanks for reading, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 13, 2009 Report Share Posted August 13, 2009 Fatigue is big issue my CVID daughter deals with. She has to get much more sleep. The IVIG has been the best thing we ever did. She doesn't get sick all the time anymore. She isn't sleeping all the time. She can play sports, etc. Without the IVIG, she was a totally different child. She was skinny, slept all the time, always sick and on antibiotics, slowed growth, terrible asthma, etc. I was thankful when we finally got through all the testing and had a diagnosis. It took time, but well worth it. I went from watching her wither in front of me, to seeing a " healthy " teenager. I take my youngest back to the dr for some results of her testing. She keeps getting sick with something, but they haven't found it is her immune system. Her asthma has gotten worse as she has gotten older, but she is still " healthier " than her sister. I hope we find some answers on Monday. I hope you get answers soon, L mom to Ashton 16 CVID, Asthma, Dyslexia & Marina 13 Asthma Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 13, 2009 Report Share Posted August 13, 2009 Fatigue is big issue my CVID daughter deals with. She has to get much more sleep. The IVIG has been the best thing we ever did. She doesn't get sick all the time anymore. She isn't sleeping all the time. She can play sports, etc. Without the IVIG, she was a totally different child. She was skinny, slept all the time, always sick and on antibiotics, slowed growth, terrible asthma, etc. I was thankful when we finally got through all the testing and had a diagnosis. It took time, but well worth it. I went from watching her wither in front of me, to seeing a " healthy " teenager. I take my youngest back to the dr for some results of her testing. She keeps getting sick with something, but they haven't found it is her immune system. Her asthma has gotten worse as she has gotten older, but she is still " healthier " than her sister. I hope we find some answers on Monday. I hope you get answers soon, L mom to Ashton 16 CVID, Asthma, Dyslexia & Marina 13 Asthma Quote Link to comment Share on other sites More sharing options...
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