Guest guest Posted February 21, 2012 Report Share Posted February 21, 2012 Hi My son (8) has been struggling with stomach aches for as long as I can remember. He is a pretty anxious kid, so we always assumed that due to his circumstances he was just having anxiety. He is on Hizentra 1x/week and is doing pretty good with staying healthy. 5 weeks ago he started having terrible diarrhea and gas. He hasn't stopped since. About 3 months ago the stomach aches were getting so bad that they were distracting him, so we started testing him. We have run every test in the book besides scoping him and have come up empty. After talking with his immunologist, we were referred to a GI doc, as the immunologist was very concerned and said that anxiety doesn't cause weeks of diarrhea. Well of course the GI doc wants to scope him, both endoscopy and colonoscopy. He wants us to add gluten and dairy back into his diet for 1 month to really test everything. I am so worried about him, as it is really impacting his confidence and desire to do his usual activities. He does fine in school, but after he is not himself. Just wondering if any of you have dealt with this and have any suggestions. Would love your thoughts or suggestions. I know that our PIDD kids are susceptible to GI issues, but with totally normal labs, I am baffled and afraid that the scope will tell us nothing as well. And then what? Lastly, could the Hizentra be causing this? Our immunologist says no. Thanks! Mom to (8) CVID and Jordan (4) CVID Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 21, 2012 Report Share Posted February 21, 2012 One other piece to the puzzle is that his IgG is good 1082, but his IgA and IgM have fallen and his WBC and Neutrophils have fallen as well. > > Hi > > My son (8) has been struggling with stomach aches for as long as I can remember. He is a pretty anxious kid, so we always assumed that due to his circumstances he was just having anxiety. He is on Hizentra 1x/week and is doing pretty good with staying healthy. 5 weeks ago he started having terrible diarrhea and gas. He hasn't stopped since. About 3 months ago the stomach aches were getting so bad that they were distracting him, so we started testing him. We have run every test in the book besides scoping him and have come up empty. After talking with his immunologist, we were referred to a GI doc, as the immunologist was very concerned and said that anxiety doesn't cause weeks of diarrhea. Well of course the GI doc wants to scope him, both endoscopy and colonoscopy. He wants us to add gluten and dairy back into his diet for 1 month to really test everything. I am so worried about him, as it is really impacting his confidence and desire to do his usual activities. He does fine in school, but after he is not himself. > > Just wondering if any of you have dealt with this and have any suggestions. Would love your thoughts or suggestions. I know that our PIDD kids are susceptible to GI issues, but with totally normal labs, I am baffled and afraid that the scope will tell us nothing as well. And then what? > > Lastly, could the Hizentra be causing this? Our immunologist says no. > > Thanks! > > Mom to (8) CVID and Jordan (4) CVID > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 21, 2012 Report Share Posted February 21, 2012 One other piece to the puzzle is that his IgG is good 1082, but his IgA and IgM have fallen and his WBC and Neutrophils have fallen as well. > > Hi > > My son (8) has been struggling with stomach aches for as long as I can remember. He is a pretty anxious kid, so we always assumed that due to his circumstances he was just having anxiety. He is on Hizentra 1x/week and is doing pretty good with staying healthy. 5 weeks ago he started having terrible diarrhea and gas. He hasn't stopped since. About 3 months ago the stomach aches were getting so bad that they were distracting him, so we started testing him. We have run every test in the book besides scoping him and have come up empty. After talking with his immunologist, we were referred to a GI doc, as the immunologist was very concerned and said that anxiety doesn't cause weeks of diarrhea. Well of course the GI doc wants to scope him, both endoscopy and colonoscopy. He wants us to add gluten and dairy back into his diet for 1 month to really test everything. I am so worried about him, as it is really impacting his confidence and desire to do his usual activities. He does fine in school, but after he is not himself. > > Just wondering if any of you have dealt with this and have any suggestions. Would love your thoughts or suggestions. I know that our PIDD kids are susceptible to GI issues, but with totally normal labs, I am baffled and afraid that the scope will tell us nothing as well. And then what? > > Lastly, could the Hizentra be causing this? Our immunologist says no. > > Thanks! > > Mom to (8) CVID and Jordan (4) CVID > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 22, 2012 Report Share Posted February 22, 2012 Hi , I have a son , 4 yrs old. He has had GI issues and diarreah for most of his life - well ~ all his life.. He is a chronic c-Diff patient, everytime he gets any form of antibiotic he has c-diff. He carries the antigen even when he doesn't have the toxin. He was on an IgG brand of medicine called Privigin for 2 years... last month the hospital changed to gammaguard. Well, within that first week he had formed " poop " better than he has ever. (He has only had formed stool for maybe 15 times (at most) for over 2 years.... so, in my experience - yes - the IgG has worked through his system a bit differently... Now, he has other factors with the C-Diff and he started out with ulcerated colitis... he has been under the care of a GI Dr. since he was 18 months old and she said that the GI system doesn't become a more mature system until they are older than 6 years old. There are so many factors but when you look at the sequence of events for him, it has been a factor, the infusion playing a part. When we first started all of this when he was 2 yrs old - His immunologiest said ~ give the IgG medication 6 months to start making a difference in his stool. Now, i am taking that as this immunologist is saying yes - it does play a factor in his system. As part of his life, he is sensitive to some types of foods... but he doesn't have to be on any kind of special diet... you might want to consider keeping a log if you can... maybe this would help. (just a thought, you might already be doing that)... Good luck and take care,Terri To: From: taw1492@... Date: Wed, 22 Feb 2012 01:47:21 +0000 Subject: Stomach Issues Hi My son (8) has been struggling with stomach aches for as long as I can remember. He is a pretty anxious kid, so we always assumed that due to his circumstances he was just having anxiety. He is on Hizentra 1x/week and is doing pretty good with staying healthy. 5 weeks ago he started having terrible diarrhea and gas. He hasn't stopped since. About 3 months ago the stomach aches were getting so bad that they were distracting him, so we started testing him. We have run every test in the book besides scoping him and have come up empty. After talking with his immunologist, we were referred to a GI doc, as the immunologist was very concerned and said that anxiety doesn't cause weeks of diarrhea. Well of course the GI doc wants to scope him, both endoscopy and colonoscopy. He wants us to add gluten and dairy back into his diet for 1 month to really test everything. I am so worried about him, as it is really impacting his confidence and desire to do his usual activities. He does fine in school, but after he is not himself. Just wondering if any of you have dealt with this and have any suggestions. Would love your thoughts or suggestions. I know that our PIDD kids are susceptible to GI issues, but with totally normal labs, I am baffled and afraid that the scope will tell us nothing as well. And then what? Lastly, could the Hizentra be causing this? Our immunologist says no. Thanks! Mom to (8) CVID and Jordan (4) CVID Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 22, 2012 Report Share Posted February 22, 2012 Hi , I have a son , 4 yrs old. He has had GI issues and diarreah for most of his life - well ~ all his life.. He is a chronic c-Diff patient, everytime he gets any form of antibiotic he has c-diff. He carries the antigen even when he doesn't have the toxin. He was on an IgG brand of medicine called Privigin for 2 years... last month the hospital changed to gammaguard. Well, within that first week he had formed " poop " better than he has ever. (He has only had formed stool for maybe 15 times (at most) for over 2 years.... so, in my experience - yes - the IgG has worked through his system a bit differently... Now, he has other factors with the C-Diff and he started out with ulcerated colitis... he has been under the care of a GI Dr. since he was 18 months old and she said that the GI system doesn't become a more mature system until they are older than 6 years old. There are so many factors but when you look at the sequence of events for him, it has been a factor, the infusion playing a part. When we first started all of this when he was 2 yrs old - His immunologiest said ~ give the IgG medication 6 months to start making a difference in his stool. Now, i am taking that as this immunologist is saying yes - it does play a factor in his system. As part of his life, he is sensitive to some types of foods... but he doesn't have to be on any kind of special diet... you might want to consider keeping a log if you can... maybe this would help. (just a thought, you might already be doing that)... Good luck and take care,Terri To: From: taw1492@... Date: Wed, 22 Feb 2012 01:47:21 +0000 Subject: Stomach Issues Hi My son (8) has been struggling with stomach aches for as long as I can remember. He is a pretty anxious kid, so we always assumed that due to his circumstances he was just having anxiety. He is on Hizentra 1x/week and is doing pretty good with staying healthy. 5 weeks ago he started having terrible diarrhea and gas. He hasn't stopped since. About 3 months ago the stomach aches were getting so bad that they were distracting him, so we started testing him. We have run every test in the book besides scoping him and have come up empty. After talking with his immunologist, we were referred to a GI doc, as the immunologist was very concerned and said that anxiety doesn't cause weeks of diarrhea. Well of course the GI doc wants to scope him, both endoscopy and colonoscopy. He wants us to add gluten and dairy back into his diet for 1 month to really test everything. I am so worried about him, as it is really impacting his confidence and desire to do his usual activities. He does fine in school, but after he is not himself. Just wondering if any of you have dealt with this and have any suggestions. Would love your thoughts or suggestions. I know that our PIDD kids are susceptible to GI issues, but with totally normal labs, I am baffled and afraid that the scope will tell us nothing as well. And then what? Lastly, could the Hizentra be causing this? Our immunologist says no. Thanks! Mom to (8) CVID and Jordan (4) CVID Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 22, 2012 Report Share Posted February 22, 2012 We also use Gammagard SubQ and have for 6 years and have NEVER had any side effects at all. We do not premedicate with anything. From: cerdaclan@... Date: Wed, 22 Feb 2012 15:34:45 +0000 Subject: Re: Stomach Issues Hi Again , You may want to pull the package insert for Hizantra and read about reported side effects. 10-14% of people given hizentra reported problems with diarrhea and other gi related problems. If all else fails, it might be worth trying a different product. We were on Vivaglobin and had problems with side effects. We all switched to gammunex and did great. After going off immunoglobin for 16 months, we restarted and are all on gammaguard and are doing great with it....no side effects....no pre-meds. It would mean infusing more volume since both are 10%. Again, best of luck. terri > > Hi > > My son (8) has been struggling with stomach aches for as long as I can remember. He is a pretty anxious kid, so we always assumed that due to his circumstances he was just having anxiety. He is on Hizentra 1x/week and is doing pretty good with staying healthy. 5 weeks ago he started having terrible diarrhea and gas. He hasn't stopped since. About 3 months ago the stomach aches were getting so bad that they were distracting him, so we started testing him. We have run every test in the book besides scoping him and have come up empty. After talking with his immunologist, we were referred to a GI doc, as the immunologist was very concerned and said that anxiety doesn't cause weeks of diarrhea. Well of course the GI doc wants to scope him, both endoscopy and colonoscopy. He wants us to add gluten and dairy back into his diet for 1 month to really test everything. I am so worried about him, as it is really impacting his confidence and desire to do his usual activities. He does fine in school, but after he is not himself. > > Just wondering if any of you have dealt with this and have any suggestions. Would love your thoughts or suggestions. I know that our PIDD kids are susceptible to GI issues, but with totally normal labs, I am baffled and afraid that the scope will tell us nothing as well. And then what? > > Lastly, could the Hizentra be causing this? Our immunologist says no. > > Thanks! > > Mom to (8) CVID and Jordan (4) CVID > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 22, 2012 Report Share Posted February 22, 2012 We also use Gammagard SubQ and have for 6 years and have NEVER had any side effects at all. We do not premedicate with anything. From: cerdaclan@... Date: Wed, 22 Feb 2012 15:34:45 +0000 Subject: Re: Stomach Issues Hi Again , You may want to pull the package insert for Hizantra and read about reported side effects. 10-14% of people given hizentra reported problems with diarrhea and other gi related problems. If all else fails, it might be worth trying a different product. We were on Vivaglobin and had problems with side effects. We all switched to gammunex and did great. After going off immunoglobin for 16 months, we restarted and are all on gammaguard and are doing great with it....no side effects....no pre-meds. It would mean infusing more volume since both are 10%. Again, best of luck. terri > > Hi > > My son (8) has been struggling with stomach aches for as long as I can remember. He is a pretty anxious kid, so we always assumed that due to his circumstances he was just having anxiety. He is on Hizentra 1x/week and is doing pretty good with staying healthy. 5 weeks ago he started having terrible diarrhea and gas. He hasn't stopped since. About 3 months ago the stomach aches were getting so bad that they were distracting him, so we started testing him. We have run every test in the book besides scoping him and have come up empty. After talking with his immunologist, we were referred to a GI doc, as the immunologist was very concerned and said that anxiety doesn't cause weeks of diarrhea. Well of course the GI doc wants to scope him, both endoscopy and colonoscopy. He wants us to add gluten and dairy back into his diet for 1 month to really test everything. I am so worried about him, as it is really impacting his confidence and desire to do his usual activities. He does fine in school, but after he is not himself. > > Just wondering if any of you have dealt with this and have any suggestions. Would love your thoughts or suggestions. I know that our PIDD kids are susceptible to GI issues, but with totally normal labs, I am baffled and afraid that the scope will tell us nothing as well. And then what? > > Lastly, could the Hizentra be causing this? Our immunologist says no. > > Thanks! > > Mom to (8) CVID and Jordan (4) CVID > Quote Link to comment Share on other sites More sharing options...
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