Guest guest Posted December 29, 2008 Report Share Posted December 29, 2008 Hi Cyndi, Are you working with an immunologist? How old is your son? Also he will need to be off of the gamma globulin for 100 days to be able to do the antibody testing and he may have some function at the beginning but he may later loose the function gradually. I would also say that just 6 treatments will not fix things. We are on Sub Q and after 2 years are very stable. But before that it took atleast a year to be at a stable time and yet we still had a pnuemonia. I would also say that my sons gut issues have mostly cleared up for now. He is no longer complaining. We use probiotics to replace the gut flora and that has made a huge difference with the antibioitics as well as the constipation and other symptoms. I am surprised they did not do a full work up before starting the gamma globulin but sometimes it just depends on the situation. Most of the other symptoms you have described such as fatigue etc go along with immune dysfunction. I know that there are specific dysfunctions that go along with skin infections but I cannot remember off the top of my head. Where are you getting your workups done?? BARBIE ________________________________ From: CYNDITK <cyndi@...> Sent: Monday, December 29, 2008 1:44:29 PM Subject: Feedback wanted Hi all, We have been through six rounds of IVIG, and are due to see our immuno next week. I want to run our current status by everyone and see if anyone has feedback. Haven't yet gotten back the latest round of testing. His initial diagnosis is hypogam, but he does not appear to have an antibody deficiency. The immuno has not yet run any T or B cell studies on him-is that strange? He is IgG subclass deficient, all the other numbers looked fine. His symptoms are severe fatigue, chronic skin infections, difficulty gaining weight, chronic gut issues-undiagnosed, severe food sensitivities, malabsorption. He has chronic nausea and constipation. Since going on IVIG his energy is better, he is up and about 75% of the time now, although he is homeschooled and rests a lot of the time. He would still not have enough energy to handle going to regular school. He still has to save up energy for out-of-the-house activities. The skin infections have not gotten any better on IVIG-he still gets them about every 4-6 weeks, and has to go on antibiotics depending on severity. He seems to have the typical dip in energy/functioning around week 3-4 post infusion. We are looking at getting a pill cam study done on his gut to see if we can do anything for the gut issues. We have not yet seen a gastro, but are scheduling to see one in January. Also we are trying thyroid and adrenal medications, as he has been diagnosed with both low thyroid and low adrenal function. With the nausea, one doctor thought H.Pylori infection, the test came back negative, and he said the tests aren't always accurate because they were testing for antibodies. We have not treated for this. He may have Lyme- we are going through the testing process for that. Anyone think of anything we might be missing? Thanks, Cyndi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 29, 2008 Report Share Posted December 29, 2008 Hi Cyndi, Are you working with an immunologist? How old is your son? Also he will need to be off of the gamma globulin for 100 days to be able to do the antibody testing and he may have some function at the beginning but he may later loose the function gradually. I would also say that just 6 treatments will not fix things. We are on Sub Q and after 2 years are very stable. But before that it took atleast a year to be at a stable time and yet we still had a pnuemonia. I would also say that my sons gut issues have mostly cleared up for now. He is no longer complaining. We use probiotics to replace the gut flora and that has made a huge difference with the antibioitics as well as the constipation and other symptoms. I am surprised they did not do a full work up before starting the gamma globulin but sometimes it just depends on the situation. Most of the other symptoms you have described such as fatigue etc go along with immune dysfunction. I know that there are specific dysfunctions that go along with skin infections but I cannot remember off the top of my head. Where are you getting your workups done?? BARBIE ________________________________ From: CYNDITK <cyndi@...> Sent: Monday, December 29, 2008 1:44:29 PM Subject: Feedback wanted Hi all, We have been through six rounds of IVIG, and are due to see our immuno next week. I want to run our current status by everyone and see if anyone has feedback. Haven't yet gotten back the latest round of testing. His initial diagnosis is hypogam, but he does not appear to have an antibody deficiency. The immuno has not yet run any T or B cell studies on him-is that strange? He is IgG subclass deficient, all the other numbers looked fine. His symptoms are severe fatigue, chronic skin infections, difficulty gaining weight, chronic gut issues-undiagnosed, severe food sensitivities, malabsorption. He has chronic nausea and constipation. Since going on IVIG his energy is better, he is up and about 75% of the time now, although he is homeschooled and rests a lot of the time. He would still not have enough energy to handle going to regular school. He still has to save up energy for out-of-the-house activities. The skin infections have not gotten any better on IVIG-he still gets them about every 4-6 weeks, and has to go on antibiotics depending on severity. He seems to have the typical dip in energy/functioning around week 3-4 post infusion. We are looking at getting a pill cam study done on his gut to see if we can do anything for the gut issues. We have not yet seen a gastro, but are scheduling to see one in January. Also we are trying thyroid and adrenal medications, as he has been diagnosed with both low thyroid and low adrenal function. With the nausea, one doctor thought H.Pylori infection, the test came back negative, and he said the tests aren't always accurate because they were testing for antibodies. We have not treated for this. He may have Lyme- we are going through the testing process for that. Anyone think of anything we might be missing? Thanks, Cyndi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 29, 2008 Report Share Posted December 29, 2008 Cyndi, What popped into my mind is Celiac Disease. I know there can be skin issues related to it..along with the other things you mentioned. Good luck! Becki > > > Hi all, > > We have been through six rounds of IVIG, and are due to see our immuno > next week. I want to run our current status by everyone and see if > anyone has feedback. > > Haven't yet gotten back the latest round of testing. His initial > diagnosis is hypogam, but he does not appear to have an antibody > deficiency. The immuno has not yet run any T or B cell studies on > him-is that strange? He is IgG subclass deficient, all the other > numbers looked fine. His symptoms are severe fatigue, chronic skin > infections, difficulty gaining weight, chronic gut issues- undiagnosed, > severe food sensitivities, malabsorption. > He has chronic nausea and constipation. > > Since going on IVIG his energy is better, he is up and about 75% of > the time now, although he is homeschooled and rests a lot of the time. > He would still not have enough energy to handle going to regular school. > He still has to save up energy for out-of-the-house activities. > The skin infections have not gotten any better on IVIG-he still gets > them about every 4-6 weeks, and has to go on antibiotics depending on > severity. > He seems to have the typical dip in energy/functioning around week 3-4 > post infusion. > > We are looking at getting a pill cam study done on his gut to see if > we can do anything for the gut issues. We have not yet seen a gastro, > but are scheduling to see one in January. Also we are trying thyroid > and adrenal medications, as he has been diagnosed with both low > thyroid and low adrenal function. > > With the nausea, one doctor thought H.Pylori infection, the test came > back negative, and he said the tests aren't always accurate because > they were testing for antibodies. We have not treated for this. > > He may have Lyme- we are going through the testing process for that. > > Anyone think of anything we might be missing? > > Thanks, > Cyndi > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 29, 2008 Report Share Posted December 29, 2008 If you know there is an antibody deficiency then B-cell testing has been done. T-cell testing isn't always done in the beginning but could be started by looking at how he responded to his HiB and MMR vaccinations. Is he on IVIG or subq? If he has a dip during his trough week then you might think to pump him up to every 3 weeks or go to subq. Has he had an upper and lower endoscopy? H pylori tests during the endoscopy would be accurate. Macey had a pillcam SB (small bowel) done last week. there are pictures on her caringbridge site. We hope to get the results today or tomorrow. Ursula - mom to (16) and Macey (13,CVID) www.caringbridge.org/visit/maceyholleman Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 29, 2008 Report Share Posted December 29, 2008 If you know there is an antibody deficiency then B-cell testing has been done. T-cell testing isn't always done in the beginning but could be started by looking at how he responded to his HiB and MMR vaccinations. Is he on IVIG or subq? If he has a dip during his trough week then you might think to pump him up to every 3 weeks or go to subq. Has he had an upper and lower endoscopy? H pylori tests during the endoscopy would be accurate. Macey had a pillcam SB (small bowel) done last week. there are pictures on her caringbridge site. We hope to get the results today or tomorrow. Ursula - mom to (16) and Macey (13,CVID) www.caringbridge.org/visit/maceyholleman Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 29, 2008 Report Share Posted December 29, 2008 Hi Barbie, We are working with Dr.Gupta at UC Irvine- he is a ped immunologist. He did some antibody testing before they started Lucas on IVIG. I'm glad to hear your son's gut problems have gotten better! I hear that fatigue goes along with PIDD, but it seems like many of the kids are still able to be pretty active between their infections. Lucas is not there yet. That's why I feel like maybe we are missing something here. > > Hi Cyndi, Are you working with an immunologist? How old is your son? Also he will need to be off of the gamma globulin for 100 days to be able to do the antibody testing and he may have some function at the beginning but he may later loose the function gradually. I would also say that just 6 treatments will not fix things. We are on Sub Q and after 2 years are very stable. But before that it took atleast a year to be at a stable time and yet we still had a pnuemonia. I would also say that my sons gut issues have mostly cleared up for now. He is no longer complaining. We use probiotics to replace the gut flora and that has made a huge difference with the antibioitics as well as the constipation and other symptoms. I am surprised they did not do a full work up before starting the gamma globulin but sometimes it just depends on the situation. Most of the other symptoms you have described such as fatigue etc go along with immune dysfunction. I know that > there are specific dysfunctions that go along with skin infections but I cannot remember off the top of my head. Where are you getting your workups done?? > > BARBIE > > > > > ________________________________ > From: CYNDITK <cyndi@...> > > Sent: Monday, December 29, 2008 1:44:29 PM > Subject: Feedback wanted > > > > Hi all, > > We have been through six rounds of IVIG, and are due to see our immuno > next week. I want to run our current status by everyone and see if > anyone has feedback. > > Haven't yet gotten back the latest round of testing. His initial > diagnosis is hypogam, but he does not appear to have an antibody > deficiency. The immuno has not yet run any T or B cell studies on > him-is that strange? He is IgG subclass deficient, all the other > numbers looked fine. His symptoms are severe fatigue, chronic skin > infections, difficulty gaining weight, chronic gut issues-undiagnosed, > severe food sensitivities, malabsorption. > He has chronic nausea and constipation. > > Since going on IVIG his energy is better, he is up and about 75% of > the time now, although he is homeschooled and rests a lot of the time. > He would still not have enough energy to handle going to regular school. > He still has to save up energy for out-of-the-house activities. > The skin infections have not gotten any better on IVIG-he still gets > them about every 4-6 weeks, and has to go on antibiotics depending on > severity. > He seems to have the typical dip in energy/functioning around week 3-4 > post infusion. > > We are looking at getting a pill cam study done on his gut to see if > we can do anything for the gut issues. We have not yet seen a gastro, > but are scheduling to see one in January. Also we are trying thyroid > and adrenal medications, as he has been diagnosed with both low > thyroid and low adrenal function. > > With the nausea, one doctor thought H.Pylori infection, the test came > back negative, and he said the tests aren't always accurate because > they were testing for antibodies. We have not treated for this. > > He may have Lyme- we are going through the testing process for that. > > Anyone think of anything we might be missing? > > Thanks, > Cyndi > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 29, 2008 Report Share Posted December 29, 2008 Hi Barbie, We are working with Dr.Gupta at UC Irvine- he is a ped immunologist. He did some antibody testing before they started Lucas on IVIG. I'm glad to hear your son's gut problems have gotten better! I hear that fatigue goes along with PIDD, but it seems like many of the kids are still able to be pretty active between their infections. Lucas is not there yet. That's why I feel like maybe we are missing something here. > > Hi Cyndi, Are you working with an immunologist? How old is your son? Also he will need to be off of the gamma globulin for 100 days to be able to do the antibody testing and he may have some function at the beginning but he may later loose the function gradually. I would also say that just 6 treatments will not fix things. We are on Sub Q and after 2 years are very stable. But before that it took atleast a year to be at a stable time and yet we still had a pnuemonia. I would also say that my sons gut issues have mostly cleared up for now. He is no longer complaining. We use probiotics to replace the gut flora and that has made a huge difference with the antibioitics as well as the constipation and other symptoms. I am surprised they did not do a full work up before starting the gamma globulin but sometimes it just depends on the situation. Most of the other symptoms you have described such as fatigue etc go along with immune dysfunction. I know that > there are specific dysfunctions that go along with skin infections but I cannot remember off the top of my head. Where are you getting your workups done?? > > BARBIE > > > > > ________________________________ > From: CYNDITK <cyndi@...> > > Sent: Monday, December 29, 2008 1:44:29 PM > Subject: Feedback wanted > > > > Hi all, > > We have been through six rounds of IVIG, and are due to see our immuno > next week. I want to run our current status by everyone and see if > anyone has feedback. > > Haven't yet gotten back the latest round of testing. His initial > diagnosis is hypogam, but he does not appear to have an antibody > deficiency. The immuno has not yet run any T or B cell studies on > him-is that strange? He is IgG subclass deficient, all the other > numbers looked fine. His symptoms are severe fatigue, chronic skin > infections, difficulty gaining weight, chronic gut issues-undiagnosed, > severe food sensitivities, malabsorption. > He has chronic nausea and constipation. > > Since going on IVIG his energy is better, he is up and about 75% of > the time now, although he is homeschooled and rests a lot of the time. > He would still not have enough energy to handle going to regular school. > He still has to save up energy for out-of-the-house activities. > The skin infections have not gotten any better on IVIG-he still gets > them about every 4-6 weeks, and has to go on antibiotics depending on > severity. > He seems to have the typical dip in energy/functioning around week 3-4 > post infusion. > > We are looking at getting a pill cam study done on his gut to see if > we can do anything for the gut issues. We have not yet seen a gastro, > but are scheduling to see one in January. Also we are trying thyroid > and adrenal medications, as he has been diagnosed with both low > thyroid and low adrenal function. > > With the nausea, one doctor thought H.Pylori infection, the test came > back negative, and he said the tests aren't always accurate because > they were testing for antibodies. We have not treated for this. > > He may have Lyme- we are going through the testing process for that. > > Anyone think of anything we might be missing? > > Thanks, > Cyndi > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 29, 2008 Report Share Posted December 29, 2008 We have also dealt with GI issues and my daughter lives with a motility disorder. Constipation in PIDers is a problem because it contributes to bacterial overgrowth. I'm not sure what is the underlying issue with your kiddo's GI but if you want to read about celiac (I see Becki mentioned that in her note) it just so happens that IG Living just published an article about it this month. http://www.igliving.com/web_pages/features.html It's written by yours truly. : ) mom to Dani, CVID+ ________________________________ From: Becki Rion <rionfam@...> Sent: Monday, December 29, 2008 12:13:21 PM Subject: Re: Feedback wanted Cyndi, What popped into my mind is Celiac Disease. I know there can be skin issues related to it..along with the other things you mentioned. Good luck! Becki > > > Hi all, > > We have been through six rounds of IVIG, and are due to see our immuno > next week. I want to run our current status by everyone and see if > anyone has feedback. > > Haven't yet gotten back the latest round of testing. His initial > diagnosis is hypogam, but he does not appear to have an antibody > deficiency. The immuno has not yet run any T or B cell studies on > him-is that strange? He is IgG subclass deficient, all the other > numbers looked fine. His symptoms are severe fatigue, chronic skin > infections, difficulty gaining weight, chronic gut issues- undiagnosed, > severe food sensitivities, malabsorption. > He has chronic nausea and constipation. > > Since going on IVIG his energy is better, he is up and about 75% of > the time now, although he is homeschooled and rests a lot of the time. > He would still not have enough energy to handle going to regular school. > He still has to save up energy for out-of-the-house activities. > The skin infections have not gotten any better on IVIG-he still gets > them about every 4-6 weeks, and has to go on antibiotics depending on > severity. > He seems to have the typical dip in energy/functioning around week 3-4 > post infusion. > > We are looking at getting a pill cam study done on his gut to see if > we can do anything for the gut issues. We have not yet seen a gastro, > but are scheduling to see one in January. Also we are trying thyroid > and adrenal medications, as he has been diagnosed with both low > thyroid and low adrenal function. > > With the nausea, one doctor thought H.Pylori infection, the test came > back negative, and he said the tests aren't always accurate because > they were testing for antibodies. We have not treated for this. > > He may have Lyme- we are going through the testing process for that. > > Anyone think of anything we might be missing? > > Thanks, > Cyndi > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 29, 2008 Report Share Posted December 29, 2008 We have also dealt with GI issues and my daughter lives with a motility disorder. Constipation in PIDers is a problem because it contributes to bacterial overgrowth. I'm not sure what is the underlying issue with your kiddo's GI but if you want to read about celiac (I see Becki mentioned that in her note) it just so happens that IG Living just published an article about it this month. http://www.igliving.com/web_pages/features.html It's written by yours truly. : ) mom to Dani, CVID+ ________________________________ From: Becki Rion <rionfam@...> Sent: Monday, December 29, 2008 12:13:21 PM Subject: Re: Feedback wanted Cyndi, What popped into my mind is Celiac Disease. I know there can be skin issues related to it..along with the other things you mentioned. Good luck! Becki > > > Hi all, > > We have been through six rounds of IVIG, and are due to see our immuno > next week. I want to run our current status by everyone and see if > anyone has feedback. > > Haven't yet gotten back the latest round of testing. His initial > diagnosis is hypogam, but he does not appear to have an antibody > deficiency. The immuno has not yet run any T or B cell studies on > him-is that strange? He is IgG subclass deficient, all the other > numbers looked fine. His symptoms are severe fatigue, chronic skin > infections, difficulty gaining weight, chronic gut issues- undiagnosed, > severe food sensitivities, malabsorption. > He has chronic nausea and constipation. > > Since going on IVIG his energy is better, he is up and about 75% of > the time now, although he is homeschooled and rests a lot of the time. > He would still not have enough energy to handle going to regular school. > He still has to save up energy for out-of-the-house activities. > The skin infections have not gotten any better on IVIG-he still gets > them about every 4-6 weeks, and has to go on antibiotics depending on > severity. > He seems to have the typical dip in energy/functioning around week 3-4 > post infusion. > > We are looking at getting a pill cam study done on his gut to see if > we can do anything for the gut issues. We have not yet seen a gastro, > but are scheduling to see one in January. Also we are trying thyroid > and adrenal medications, as he has been diagnosed with both low > thyroid and low adrenal function. > > With the nausea, one doctor thought H.Pylori infection, the test came > back negative, and he said the tests aren't always accurate because > they were testing for antibodies. We have not treated for this. > > He may have Lyme- we are going through the testing process for that. > > Anyone think of anything we might be missing? > > Thanks, > Cyndi > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 30, 2008 Report Share Posted December 30, 2008 --Does he have asthma/resp problems? My daughter(11, cvid) is also on IVIG, and even so, if her asthma is flaring--which is usually silent---her biggest symptom is fatigue. If she is tired, having trouble getting up in the morning, taking naps, and acting like a cranky two yr old:), odds are, its asthma. Her lung function testing almost always correlates.......if she's been doing well, energy, in a good mood.....her PFT's are usually great. If she's been tired, worn out, and grumpy, she's likely down in the 20's or 30's. She usually isnt coughing or wheezing.....just tired. HTH, valarie mom to 3 w/cvid In , " CYNDITK " <cyndi@...> wrote: > > > > Hi Barbie, > > We are working with Dr.Gupta at UC Irvine- he is a ped immunologist. > He did some antibody testing before they started Lucas on IVIG. > > I'm glad to hear your son's gut problems have gotten better! > > I hear that fatigue goes along with PIDD, but it seems like many of > the kids are still able to be pretty active between their infections. > Lucas is not there yet. That's why I feel like maybe we are missing > something here. > > > > > > > Hi Cyndi, Are you working with an immunologist? How old is your > son? Also he will need to be off of the gamma globulin for 100 days to > be able to do the antibody testing and he may have some function at > the beginning but he may later loose the function gradually. I would > also say that just 6 treatments will not fix things. We are on Sub Q > and after 2 years are very stable. But before that it took atleast a > year to be at a stable time and yet we still had a pnuemonia. I would > also say that my sons gut issues have mostly cleared up for now. He is > no longer complaining. We use probiotics to replace the gut flora and > that has made a huge difference with the antibioitics as well as the > constipation and other symptoms. I am surprised they did not do a > full work up before starting the gamma globulin but sometimes it just > depends on the situation. Most of the other symptoms you have > described such as fatigue etc go along with immune dysfunction. I know > that > > there are specific dysfunctions that go along with skin infections > but I cannot remember off the top of my head. Where are you getting > your workups done?? > > > > BARBIE > > > > > > > > > > ________________________________ > > From: CYNDITK <cyndi@> > > > > Sent: Monday, December 29, 2008 1:44:29 PM > > Subject: Feedback wanted > > > > > > > > Hi all, > > > > We have been through six rounds of IVIG, and are due to see our immuno > > next week. I want to run our current status by everyone and see if > > anyone has feedback. > > > > Haven't yet gotten back the latest round of testing. His initial > > diagnosis is hypogam, but he does not appear to have an antibody > > deficiency. The immuno has not yet run any T or B cell studies on > > him-is that strange? He is IgG subclass deficient, all the other > > numbers looked fine. His symptoms are severe fatigue, chronic skin > > infections, difficulty gaining weight, chronic gut issues-undiagnosed, > > severe food sensitivities, malabsorption. > > He has chronic nausea and constipation. > > > > Since going on IVIG his energy is better, he is up and about 75% of > > the time now, although he is homeschooled and rests a lot of the time. > > He would still not have enough energy to handle going to regular school. > > He still has to save up energy for out-of-the-house activities. > > The skin infections have not gotten any better on IVIG-he still gets > > them about every 4-6 weeks, and has to go on antibiotics depending on > > severity. > > He seems to have the typical dip in energy/functioning around week 3-4 > > post infusion. > > > > We are looking at getting a pill cam study done on his gut to see if > > we can do anything for the gut issues. We have not yet seen a gastro, > > but are scheduling to see one in January. Also we are trying thyroid > > and adrenal medications, as he has been diagnosed with both low > > thyroid and low adrenal function. > > > > With the nausea, one doctor thought H.Pylori infection, the test came > > back negative, and he said the tests aren't always accurate because > > they were testing for antibodies. We have not treated for this. > > > > He may have Lyme- we are going through the testing process for that. > > > > Anyone think of anything we might be missing? > > > > Thanks, > > Cyndi > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 30, 2008 Report Share Posted December 30, 2008 Valarie, That's really interesting. He doesn't have lung issues, but I notice the same thing happens whenever he has a skin infection- he gets much more tired, can't get up, can't function. And when the gut issues are flaring, same thing. Maybe as Barbie suggested after a year or two of IVIG his energy will be better overall...I hope so...otherwise it doesn't look like he will be able to lead any kind of life out in the world...that is my fear. He just doesn't have enough energy to function. Cyndi mom to Lucas, unknown PID > > > > > > Hi Cyndi, Are you working with an immunologist? How old is your > > son? Also he will need to be off of the gamma globulin for 100 days to > > be able to do the antibody testing and he may have some function at > > the beginning but he may later loose the function gradually. I would > > also say that just 6 treatments will not fix things. We are on Sub Q > > and after 2 years are very stable. But before that it took atleast a > > year to be at a stable time and yet we still had a pnuemonia. I would > > also say that my sons gut issues have mostly cleared up for now. He is > > no longer complaining. We use probiotics to replace the gut flora and > > that has made a huge difference with the antibioitics as well as the > > constipation and other symptoms. I am surprised they did not do a > > full work up before starting the gamma globulin but sometimes it just > > depends on the situation. Most of the other symptoms you have > > described such as fatigue etc go along with immune dysfunction. I know > > that > > > there are specific dysfunctions that go along with skin infections > > but I cannot remember off the top of my head. Where are you getting > > your workups done?? > > > > > > BARBIE > > > > > > > > > > > > > > > ________________________________ > > > From: CYNDITK <cyndi@> > > > > > > Sent: Monday, December 29, 2008 1:44:29 PM > > > Subject: Feedback wanted > > > > > > > > > > > > Hi all, > > > > > > We have been through six rounds of IVIG, and are due to see our immuno > > > next week. I want to run our current status by everyone and see if > > > anyone has feedback. > > > > > > Haven't yet gotten back the latest round of testing. His initial > > > diagnosis is hypogam, but he does not appear to have an antibody > > > deficiency. The immuno has not yet run any T or B cell studies on > > > him-is that strange? He is IgG subclass deficient, all the other > > > numbers looked fine. His symptoms are severe fatigue, chronic skin > > > infections, difficulty gaining weight, chronic gut issues-undiagnosed, > > > severe food sensitivities, malabsorption. > > > He has chronic nausea and constipation. > > > > > > Since going on IVIG his energy is better, he is up and about 75% of > > > the time now, although he is homeschooled and rests a lot of the time. > > > He would still not have enough energy to handle going to regular > school. > > > He still has to save up energy for out-of-the-house activities. > > > The skin infections have not gotten any better on IVIG-he still gets > > > them about every 4-6 weeks, and has to go on antibiotics depending on > > > severity. > > > He seems to have the typical dip in energy/functioning around week 3-4 > > > post infusion. > > > > > > We are looking at getting a pill cam study done on his gut to see if > > > we can do anything for the gut issues. We have not yet seen a gastro, > > > but are scheduling to see one in January. Also we are trying thyroid > > > and adrenal medications, as he has been diagnosed with both low > > > thyroid and low adrenal function. > > > > > > With the nausea, one doctor thought H.Pylori infection, the test came > > > back negative, and he said the tests aren't always accurate because > > > they were testing for antibodies. We have not treated for this. > > > > > > He may have Lyme- we are going through the testing process for that. > > > > > > Anyone think of anything we might be missing? > > > > > > Thanks, > > > Cyndi > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 30, 2008 Report Share Posted December 30, 2008 " Maybe as Barbie suggested after a year or two ofIVIG his energy will be better overall...I hope so...otherwise itdoesn't look like he will be able to lead any kind of life out in theworld...that is my fear. He just doesn't have enough energy to function. " I wanted to chime in here. My son was homebound 2 1/2 years ago. Sleepy, unable to function, side effects from IVIG. Now he is healthier than all of us. It wasn't until this year that we noticed the dramatic change. He has been on gamma for three years this month. Even this summer he would have bad days/weeks. He MIGHT get 7 hrs sleep a night now, but it seems to be enough. (He couldn't function on less than 12-13 before. He would fall asleep in class, IF he made it to school.) He has missed 3 days of school so far (including check outs) due to migraines, not infection. I am FINALLY seeing some results. Don't get me wrong, after about 3 months of starting gamma, he was better healthwise- but now he is like Superman. Hang in there. At first it will be gradual, but then he will take off like a rocket. Also, someone put it best in a response to me some time back. (I think it was Dale.) She said that it takes a bit to root out all the " hidden " infections. The gamma takes a bit to " soak into " the muscles and tissues. I know was worse the first couple of months and we thought about quitting. We felt the treatment was worse for him than the disease. Thank God we stuck with it. Just a funny added note: He lost teeth in 2006 that never grew in. The dentist said not to worry, they were there. About 3 months ago they started coming in, which really excited out Immuno. He explained that the body prioritizes, and teeth were the last on the list. (We could live w/o them.) Now that is " healthy " the body is not holding a reserve (or maybe his reserve has built up enough.) The body knows it's OK to focus on teeth. I thought Dr Lee was gonna jump up and down, he was so excited. Hang in there. It may be a long road, but there IS a light at the end of it. @...: cyndi@...: Tue, 30 Dec 2008 17:32:57 +0000Subject: Re: Feedback wanted Valarie,That's really interesting. He doesn't have lung issues, but I noticethe same thing happens whenever he has a skin infection- he gets muchmore tired, can't get up, can't function. And when the gut issues areflaring, same thing. Maybe as Barbie suggested after a year or two ofIVIG his energy will be better overall...I hope so...otherwise itdoesn't look like he will be able to lead any kind of life out in theworld...that is my fear. He just doesn't have enough energy to function.Cyndimom to Lucas, unknown PID> > >> > > Hi Cyndi, Are you working with an immunologist? How old is your> > son? Also he will need to be off of the gamma globulin for 100 days to> > be able to do the antibody testing and he may have some function at> > the beginning but he may later loose the function gradually. I would> > also say that just 6 treatments will not fix things. We are on Sub Q> > and after 2 years are very stable. But before that it took atleast a> > year to be at a stable time and yet we still had a pnuemonia. I would> > also say that my sons gut issues have mostly cleared up for now. He is> > no longer complaining. We use probiotics to replace the gut flora and> > that has made a huge difference with the antibioitics as well as the> > constipation and other symptoms. I am surprised they did not do a> > full work up before starting the gamma globulin but sometimes it just> > depends on the situation. Most of the other symptoms you have> > described such as fatigue etc go along with immune dysfunction. I know> > that> > > there are specific dysfunctions that go along with skin infections> > but I cannot remember off the top of my head. Where are you getting> > your workups done??> > > > > > BARBIE > > > > > > > > > > > > > > > ________________________________> > > From: CYNDITK <cyndi@>> > > > > > Sent: Monday, December 29, 2008 1:44:29 PM> > > Subject: Feedback wanted> > > > > > > > > > > > Hi all,> > > > > > We have been through six rounds of IVIG, and are due to see ourimmuno> > > next week. I want to run our current status by everyone and see if> > > anyone has feedback.> > > > > > Haven't yet gotten back the latest round of testing. His initial> > > diagnosis is hypogam, but he does not appear to have an antibody> > > deficiency. The immuno has not yet run any T or B cell studies on> > > him-is that strange? He is IgG subclass deficient, all the other> > > numbers looked fine. His symptoms are severe fatigue, chronic skin> > > infections, difficulty gaining weight, chronic gutissues-undiagnosed,> > > severe food sensitivities, malabsorption. > > > He has chronic nausea and constipation. > > > > > > Since going on IVIG his energy is better, he is up and about 75% of> > > the time now, although he is homeschooled and rests a lot of thetime.> > > He would still not have enough energy to handle going to regular> school.> > > He still has to save up energy for out-of-the-house activities. > > > The skin infections have not gotten any better on IVIG-he still gets> > > them about every 4-6 weeks, and has to go on antibioticsdepending on> > > severity.> > > He seems to have the typical dip in energy/functioning aroundweek 3-4> > > post infusion.> > > > > > We are looking at getting a pill cam study done on his gut to see if> > > we can do anything for the gut issues. We have not yet seen agastro,> > > but are scheduling to see one in January. Also we are trying thyroid> > > and adrenal medications, as he has been diagnosed with both low> > > thyroid and low adrenal function.> > > > > > With the nausea, one doctor thought H.Pylori infection, the testcame> > > back negative, and he said the tests aren't always accurate because> > > they were testing for antibodies. We have not treated for this.> > > > > > He may have Lyme- we are going through the testing process for that.> > > > > > Anyone think of anything we might be missing?> > > > > > Thanks,> > > Cyndi> > > > > > > > > > > > [Non-text portions of this message have been removed]> > >> >> _________________________________________________________________ It’s the same Hotmail®. If by “same” you mean up to 70% faster. http://windowslive.com/online/hotmail?ocid=TXT_TAGLM_WL_hotmail_acq_broad1_12200\ 8 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 1, 2009 Report Share Posted January 1, 2009 > > >> > > Hi Cyndi, Are you working with an immunologist? How old is your> > son? Also he will need to be off of the gamma globulin for 100 days to> > be able to do the antibody testing and he may have some function at> > the beginning but he may later loose the function gradually. I would> > also say that just 6 treatments will not fix things. We are on Sub Q> > and after 2 years are very stable. But before that it took atleast a> > year to be at a stable time and yet we still had a pnuemonia. I would> > also say that my sons gut issues have mostly cleared up for now. He is> > no longer complaining. We use probiotics to replace the gut flora and> > that has made a huge difference with the antibioitics as well as the> > constipation and other symptoms. I am surprised they did not do a> > full work up before starting the gamma globulin but sometimes it just> > depends on the situation. Most of the other symptoms you have> > described such as fatigue etc go along with immune dysfunction. I know> > that> > > there are specific dysfunctions that go along with skin infections> > but I cannot remember off the top of my head. Where are you getting> > your workups done??> > > > > > BARBIE > > > > > > > > > > > > > > > ________________________________> > > From: CYNDITK <cyndi@>> > > To: > > > Sent: Monday, December 29, 2008 1:44:29 PM> > > Subject: Feedback wanted> > > > > > > > > > > > Hi all,> > > > > > We have been through six rounds of IVIG, and are due to see ourimmuno> > > next week. I want to run our current status by everyone and see if> > > anyone has feedback.> > > > > > Haven't yet gotten back the latest round of testing. His initial> > > diagnosis is hypogam, but he does not appear to have an antibody> > > deficiency. The immuno has not yet run any T or B cell studies on> > > him-is that strange? He is IgG subclass deficient, all the other> > > numbers looked fine. His symptoms are severe fatigue, chronic skin> > > infections, difficulty gaining weight, chronic gutissues-undiagnosed,> > > severe food sensitivities, malabsorption. > > > He has chronic nausea and constipation. > > > > > > Since going on IVIG his energy is better, he is up and about 75% of> > > the time now, although he is homeschooled and rests a lot of thetime.> > > He would still not have enough energy to handle going to regular> school.> > > He still has to save up energy for out-of-the-house activities. > > > The skin infections have not gotten any better on IVIG-he still gets> > > them about every 4-6 weeks, and has to go on antibioticsdepending on> > > severity.> > > He seems to have the typical dip in energy/functioning aroundweek 3-4> > > post infusion.> > > > > > We are looking at getting a pill cam study done on his gut to see if> > > we can do anything for the gut issues. We have not yet seen agastro,> > > but are scheduling to see one in January. Also we are trying thyroid> > > and adrenal medications, as he has been diagnosed with both low> > > thyroid and low adrenal function.> > > > > > With the nausea, one doctor thought H.Pylori infection, the testcame> > > back negative, and he said the tests aren't always accurate because> > > they were testing for antibodies. We have not treated for this.> > > > > > He may have Lyme- we are going through the testing process for that.> > > > > > Anyone think of anything we might be missing?> > > > > > Thanks,> > > Cyndi> > > > > > > > > > > > [Non-text portions of this message have been removed]> > >> >> > > > > > > _________________________________________________________________ > It's the same Hotmail®. If by " same " you mean up to 70% faster. > http://windowslive.com/online/hotmail?ocid=TXT_TAGLM_WL_hotmail_acq_broad1_12200\ 8 > > Quote Link to comment Share on other sites More sharing options...
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