Guest guest Posted January 21, 2008 Report Share Posted January 21, 2008 One of my boys has low B-cells.. The way I understand it is that it is common in IgG deficiency because the B cells make the IgG (someone correct me if I am wrong) My boys had bad side effects with IVIG, but have had none with SCIG-other than a mild site reaction. My boys are not IgA deficient. Peace be with you, Pattie History doesn't repeat itself, but it does rhyme. ~ Mark Twain _____ From: [mailto: ] On Behalf Of plant4birds Sent: Monday, January 21, 2008 10:56 AM Subject: B cells? Hi! My name is Betty. I live in Maine, have total IgA deficiency, 2 kids with the same. I also have multiple sclerosis and my son has Aspergers Syndrome. My daughter just got a whole new immunological work-up. In addition to the total IgA deficiency, the doctor said she has significantly low level of B cells and the b cells she has aren't functioning properly. Can anybody help us understand what this means? We are considering a trial course of IV or sub-q IGg for her, even though it isn't normally used in Iga deficiency. Do any of you have low IgA kids who benefitted from IGg treatment? She - and we, her parents - are very nervous about this. The side effects look pretty awful, although it might be worth it if she finally had some healthy periods in her life. Any thoughts or experiences would be appreciated. Thank you all for being there. This group keeps me going through the tough days.....like today, below zero, cold, windy, with 2 sick kids. Thanks! Betty Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 21, 2008 Report Share Posted January 21, 2008 Betty, My name is Jerri and we live west of Atlanta. My daughter is 14 and has Selective Antibody Deficiency. She makes antibodies to everything except streptococcal pneumonia. IGa was low at age 11 and before. But now, at age 14 she recently scored 57, when before it was 28.....go figure. Anway, she was on IVIG prior to the prophylactic antibiotic and did fine. Only side effect was a headache about 2 days later. One dose of Advil generally took care of it. We did however, keep her well hydrated really pushing the fluids 2 days prior to the infusion, and she drank alot during the infusion which made her have to go to the bathroom. Her infusion was therefore slowed down for these restroom trips. However, after 4 years of IVIG her veins are shot. If we ever have to go back on gammaglobulins we are going to do sub-q. plant4birds <gardenlass@...> wrote: Hi! My name is Betty. I live in Maine, have total IgA deficiency, 2 kids with the same. I also have multiple sclerosis and my son has Aspergers Syndrome. My daughter just got a whole new immunological work-up. In addition to the total IgA deficiency, the doctor said she has significantly low level of B cells and the b cells she has aren't functioning properly. Can anybody help us understand what this means? We are considering a trial course of IV or sub-q IGg for her, even though it isn't normally used in Iga deficiency. Do any of you have low IgA kids who benefitted from IGg treatment? She - and we, her parents - are very nervous about this. The side effects look pretty awful, although it might be worth it if she finally had some healthy periods in her life. Any thoughts or experiences would be appreciated. Thank you all for being there. This group keeps me going through the tough days.....like today, below zero, cold, windy, with 2 sick kids. Thanks! Betty Jerri --------------------------------- Never miss a thing. Make your homepage. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 21, 2008 Report Share Posted January 21, 2008 plant4birds wrote: > > > she > has significantly low level of B cells and the b cells she has aren't > functioning properly. Can anybody help us understand what this means? > It means that even though she has total IgA deficiency -- she now has an additional diagnosis that includes non-functional IgG. B-cells are responsible for producing the antibody IgM. IgM produces the antibodies IgA and IgG. The correct treatment for non-functional or low number B-cells is IgG replacement. There are two methods of infusion - IV or Sub-cutaneous. Your doctor will start you on one or the other -- but you need to know that you have a choice in the future as to which method of administration you want to use. The side effects for IVIG are higher because you infuse a larger amount each time - less frequently. The SCIG is infused more frequently, but in smaller amounts and not directly into the blood stream. Most of the time when a parent is worried about side-effects of IVIG I tell them that there is absolutely nothing to worry about. All the side effects are treatable with minor adjustments. But, there is ONE case that is worrisome -- that's when a person has built anti-IgA antibodies. The only person who can build IgA antibodies is a person who has zero IgA. (Not every zero IgA person builds antibodies to IgA - but some do and those are the people who can have really nasty side-effects and must be monitored very, very closely). So, yes, you are right in being concerned about her possible side-effects. I believe there are tests that can be run to determine if she has built those antibodies. Your doctor will need to check that very carefully before infusing her because all IgG products contain small amounts of IgA. If she has developed anti-IgA antibodies, (not all IgA deficient patients do) she will have increased side effects and need for precautions. Your doctor should know (but if he doesn't, have him call Baxter directly) that Baxter produces a product that is the lowest IgA content available. (At least the last I heard it was). That's the product I would recommend. Also, I recommend that you have on hand the Immune Deficiency Foundation's Patient and Family Handbook. It will explain the difference between IgA deficiency and IgG deficiency. You can get it by calling 1-800-296-4433. Hope that helps, In His service, dale > We are considering a trial course of IV or sub-q IGg for her, even > though it isn't normally used in Iga deficiency. Do any of you have > low IgA kids who benefitted from IGg treatment? She - and we, her > parents - are very nervous about this. The side effects look pretty > awful, although it might be worth it if she finally had some healthy > periods in her life. > > Any thoughts or experiences would be appreciated. Thank you all for > being there. This group keeps me going through the tough > days.....like today, below zero, cold, windy, with 2 sick kids. > > Thanks! > > Betty > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 21, 2008 Report Share Posted January 21, 2008 Dale Dear, I think you just ruined my day > lol:) I'd love to hear thought thoughts on my toddlers latest labs since I'm stuck waiting a couple weeks to talk to the Dr. In the past she's had low everything and zero response to vax. About 6 months ago we saw a sudden jump in Ig levels so we re vax'd to check for response (ironically we were to start IVIG the following month when we saw the jump). She responded big time and a recheck of titers shows she's continuing to build titers to prevnar and HIB and she's got titers to strains in the pnumovax which she hasn't gotten yet due to age so I'm guessing those have been passed though me as I have gotten it and she's still nursing ( avoided IVIG for 5 years due to nursing, my milk is like super milk with it comes to antibodies lol! We clearly saw its effect on her labs and every time we tried to wean she'd crash but after 5 years of nursing I'd had enough and weaned her and all hell broke lose and we had to start IVIG at that point) . IgG and IgA look good but IgM is only 29 (range 47-200) and her ANC is low (1156) and there's something going on with Delta platelets because it was flagged as dropping from 2356 on 9/12/07 to 444 on 1/11/08 and her HCT is high but HBG is normal, go figure but I'm guessing that's an unrelated issue. Any thoughts? She's been doing well but both my kids are kept in a bubble pretty much so they don't have much chance to actually get sick. fwiw, had pretty normal Ig levels but no vax response and defective B cells and T cells gave sun optimal response. 7 hypogamma with specific antibody def on SCIG Lilly 19 months hypogamma with specific antibody def (hopefully transient) Re: B cells? > plant4birds wrote: >> >> >> she >> has significantly low level of B cells and the b cells she has aren't >> functioning properly. Can anybody help us understand what this means? >> > > It means that even though she has total IgA deficiency -- she now has an > additional diagnosis that includes non-functional IgG. B-cells are > responsible for producing the antibody IgM. IgM produces the antibodies > IgA and IgG. The correct treatment for non-functional or low number > B-cells is IgG replacement. There are two methods of infusion - IV or > Sub-cutaneous. Your doctor will start you on one or the other -- but > you need to know that you have a choice in the future as to which method > of administration you want to use. > > The side effects for IVIG are higher because you infuse a larger amount > each time - less frequently. The SCIG is infused more frequently, but > in smaller amounts and not directly into the blood stream. > > Most of the time when a parent is worried about side-effects of IVIG I > tell them that there is absolutely nothing to worry about. All the side > effects are treatable with minor adjustments. But, there is ONE case > that is worrisome -- that's when a person has built anti-IgA antibodies. > The only person who can build IgA antibodies is a person who has zero > IgA. (Not every zero IgA person builds antibodies to IgA - but some do > and those are the people who can have really nasty side-effects and must > be monitored very, very closely). > > So, yes, you are right in being concerned about her possible > side-effects. I believe there are tests that can be run to determine if > she has built those antibodies. Your doctor will need to check that > very carefully before infusing her because all IgG products contain > small amounts of IgA. If she has developed anti-IgA antibodies, (not > all IgA deficient patients do) she will have increased side effects and > need for precautions. > > Your doctor should know (but if he doesn't, have him call Baxter > directly) that Baxter produces a product that is the lowest IgA content > available. (At least the last I heard it was). That's the product I > would recommend. > > Also, I recommend that you have on hand the Immune Deficiency > Foundation's Patient and Family Handbook. It will explain the > difference between IgA deficiency and IgG deficiency. You can get it by > calling 1-800-296-4433. > > Hope that helps, > > In His service, > dale > > > >> We are considering a trial course of IV or sub-q IGg for her, even >> though it isn't normally used in Iga deficiency. Do any of you have >> low IgA kids who benefitted from IGg treatment? She - and we, her >> parents - are very nervous about this. The side effects look pretty >> awful, although it might be worth it if she finally had some healthy >> periods in her life. >> >> Any thoughts or experiences would be appreciated. Thank you all for >> being there. This group keeps me going through the tough >> days.....like today, below zero, cold, windy, with 2 sick kids. >> >> Thanks! >> >> Betty >> >> > > > > This forum is open to parents and caregivers of children diagnosed with a > Primary Immune Deficiency. Opinions or medical advice stated here are the > sole responsibility of the poster and should not be taken as professional > advice. > > To unsubscribe -unsubscribegroups (DOT) > To search group archives go to: > /messages > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 21, 2008 Report Share Posted January 21, 2008 wrote: > > > Dale Dear, > > I think you just ruined my day > lol:) Sorry about that!!!! Actually, what you've told me here sounds really, really good. Let me see if I understand it. Your is antibody specific deficient and is on IVIG. Your 19 month old toddler, Lilly, is having a pretty stable clinical picture, and recently labs showed that she had built a good protective titer to vaccinations. She shows low IgM. From what I gather, at 19 months, she could very well be just beginning to build her own immune system since you've seen a recent improvement. Hopefully her IgM will continue to build just as her IgG has. As far I know, you don't need IgM except that it becomes IgA and IgG -- as long as that is sufficient - you are good to go. If her numbers are good and she's building protection and her clinical picture is stable -- sounds like you may be dealing with a transient condition! Wouldn't that be great!!!! I really know nothing about ANC and neutropenia and those issues. Never dealt with it and there's other people on the group that understand that lab stuff much better. I'm thinking if I understand what you've told me correctly that you are headed to an appointment where the doctor is going to suggest that you hold off on IVIG for a few more months to see if there's really any need. The criteria for starting IgG replacement is when there's no protection and obviously she's now building protection -- so...... I think you are going to hear good news. Now about the level of IgM -- I believe that's what you are most concerned about -- what I've heard is that nobody really knows all the variations in general population of what is normal and what is not. It's not a common test that everyone has -- so the " real " criteria for " normal " is whether it functions properly. If she's building antibodies -- she's got functioning IgG! So, I would take off the worry hat for right now and relax and even do a little rejoicing. At least for now! In His service, dale Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 21, 2008 Report Share Posted January 21, 2008 My son is 12 and he has been on IVIg from the time he was 3 until he was 10. We switched to Sub Q then and I would never go back. He was initially IgA deficient. He had less than 7 on several draws over a period of several years. Then at about 2 he began to develop IgA. But all of his other labs changed as well. Our current diagnosis is CVID since their is not a better diagnosis out there per our doctor. About 4 years ago we were told he had low total B cells and they did not function well but the treatment was the same. He also does not build antibodies to different both T and B cells bacteria and viruses and things like Candida. It is interesting to see how it has changed over the years. We were all told that it is dysgammaglobulinemia more than anything else. Meaning " it just aint working right " per my immuno. BARBIE From: Dale Weatherford <dale@...> Sent: Monday, January 21, 2008 11:43:17 AM Subject: Re: B cells? plant4birds wrote: > > > she > has significantly low level of B cells and the b cells she has aren't > functioning properly. Can anybody help us understand what this means? > It means that even though she has total IgA deficiency -- she now has an additional diagnosis that includes non-functional IgG. B-cells are responsible for producing the antibody IgM. IgM produces the antibodies IgA and IgG. The correct treatment for non-functional or low number B-cells is IgG replacement. There are two methods of infusion - IV or Sub-cutaneous. Your doctor will start you on one or the other -- but you need to know that you have a choice in the future as to which method of administration you want to use. The side effects for IVIG are higher because you infuse a larger amount each time - less frequently. The SCIG is infused more frequently, but in smaller amounts and not directly into the blood stream. Most of the time when a parent is worried about side-effects of IVIG I tell them that there is absolutely nothing to worry about. All the side effects are treatable with minor adjustments. But, there is ONE case that is worrisome -- that's when a person has built anti-IgA antibodies. The only person who can build IgA antibodies is a person who has zero IgA. (Not every zero IgA person builds antibodies to IgA - but some do and those are the people who can have really nasty side-effects and must be monitored very, very closely). So, yes, you are right in being concerned about her possible side-effects. I believe there are tests that can be run to determine if she has built those antibodies. Your doctor will need to check that very carefully before infusing her because all IgG products contain small amounts of IgA. If she has developed anti-IgA antibodies, (not all IgA deficient patients do) she will have increased side effects and need for precautions. Your doctor should know (but if he doesn't, have him call Baxter directly) that Baxter produces a product that is the lowest IgA content available. (At least the last I heard it was). That's the product I would recommend. Also, I recommend that you have on hand the Immune Deficiency Foundation's Patient and Family Handbook. It will explain the difference between IgA deficiency and IgG deficiency. You can get it by calling 1-800-296-4433. Hope that helps, In His service, dale > We are considering a trial course of IV or sub-q IGg for her, even > though it isn't normally used in Iga deficiency. Do any of you have > low IgA kids who benefitted from IGg treatment? She - and we, her > parents - are very nervous about this. The side effects look pretty > awful, although it might be worth it if she finally had some healthy > periods in her life. > > Any thoughts or experiences would be appreciated. Thank you all for > being there. This group keeps me going through the tough > days.....like today, below zero, cold, windy, with 2 sick kids. > > Thanks! > > Betty > > ________________________________________________________________________________\ ____ Be a better friend, newshound, and know-it-all with Mobile. Try it now. http://mobile./;_ylt=Ahu06i62sR8HDtDypao8Wcj9tAcJ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 22, 2008 Report Share Posted January 22, 2008 Barbie, It's my understanding that full production of IGA doesn't happen until age 2. initially had an IGA deficiency per one hematologist,but another disagreed. I believe the IGA issues was discussed at the IDF conference in 2005, which put some of my anxiety away. I think there is alot that they don't know for sure, especially when things aren't clear cut, like with my . They decided to put us on SCIG To protect him and see if it made a difference. It did make a difference for us and quality of life is so much better... I learned so much from Dale and Ursula. Hang in there. Re: B cells? plant4birds wrote: > > > she > has significantly low level of B cells and the b cells she has aren't > functioning properly. Can anybody help us understand what this means? > It means that even though she has total IgA deficiency -- she now has an additional diagnosis that includes non-functional IgG. B-cells are responsible for producing the antibody IgM. IgM produces the antibodies IgA and IgG. The correct treatment for non-functional or low number B-cells is IgG replacement. There are two methods of infusion - IV or Sub-cutaneous. Your doctor will start you on one or the other -- but you need to know that you have a choice in the future as to which method of administration you want to use. The side effects for IVIG are higher because you infuse a larger amount each time - less frequently. The SCIG is infused more frequently, but in smaller amounts and not directly into the blood stream. Most of the time when a parent is worried about side-effects of IVIG I tell them that there is absolutely nothing to worry about. All the side effects are treatable with minor adjustments. But, there is ONE case that is worrisome -- that's when a person has built anti-IgA antibodies. The only person who can build IgA antibodies is a person who has zero IgA. (Not every zero IgA person builds antibodies to IgA - but some do and those are the people who can have really nasty side-effects and must be monitored very, very closely). So, yes, you are right in being concerned about her possible side-effects. I believe there are tests that can be run to determine if she has built those antibodies. Your doctor will need to check that very carefully before infusing her because all IgG products contain small amounts of IgA. If she has developed anti-IgA antibodies, (not all IgA deficient patients do) she will have increased side effects and need for precautions. Your doctor should know (but if he doesn't, have him call Baxter directly) that Baxter produces a product that is the lowest IgA content available. (At least the last I heard it was). That's the product I would recommend. Also, I recommend that you have on hand the Immune Deficiency Foundation's Patient and Family Handbook. It will explain the difference between IgA deficiency and IgG deficiency. You can get it by calling 1-800-296-4433. Hope that helps, In His service, dale > We are considering a trial course of IV or sub-q IGg for her, even > though it isn't normally used in Iga deficiency. Do any of you have > low IgA kids who benefitted from IGg treatment? She - and we, her > parents - are very nervous about this. The side effects look pretty > awful, although it might be worth it if she finally had some healthy > periods in her life. > > Any thoughts or experiences would be appreciated. Thank you all for > being there. This group keeps me going through the tough > days.....like today, below zero, cold, windy, with 2 sick kids. > > Thanks! > > Betty > > __________________________________________________________ Be a better friend, newshound, and know-it-all with Mobile. Try it now. http://mobile./;_ylt=Ahu06i62sR8HDtDypao8Wcj9tAcJ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 22, 2008 Report Share Posted January 22, 2008 Barbie, It's my understanding that full production of IGA doesn't happen until age 2. initially had an IGA deficiency per one hematologist,but another disagreed. I believe the IGA issues was discussed at the IDF conference in 2005, which put some of my anxiety away. I think there is alot that they don't know for sure, especially when things aren't clear cut, like with my . They decided to put us on SCIG To protect him and see if it made a difference. It did make a difference for us and quality of life is so much better... I learned so much from Dale and Ursula. Hang in there. Re: B cells? plant4birds wrote: > > > she > has significantly low level of B cells and the b cells she has aren't > functioning properly. Can anybody help us understand what this means? > It means that even though she has total IgA deficiency -- she now has an additional diagnosis that includes non-functional IgG. B-cells are responsible for producing the antibody IgM. IgM produces the antibodies IgA and IgG. The correct treatment for non-functional or low number B-cells is IgG replacement. There are two methods of infusion - IV or Sub-cutaneous. Your doctor will start you on one or the other -- but you need to know that you have a choice in the future as to which method of administration you want to use. The side effects for IVIG are higher because you infuse a larger amount each time - less frequently. The SCIG is infused more frequently, but in smaller amounts and not directly into the blood stream. Most of the time when a parent is worried about side-effects of IVIG I tell them that there is absolutely nothing to worry about. All the side effects are treatable with minor adjustments. But, there is ONE case that is worrisome -- that's when a person has built anti-IgA antibodies. The only person who can build IgA antibodies is a person who has zero IgA. (Not every zero IgA person builds antibodies to IgA - but some do and those are the people who can have really nasty side-effects and must be monitored very, very closely). So, yes, you are right in being concerned about her possible side-effects. I believe there are tests that can be run to determine if she has built those antibodies. Your doctor will need to check that very carefully before infusing her because all IgG products contain small amounts of IgA. If she has developed anti-IgA antibodies, (not all IgA deficient patients do) she will have increased side effects and need for precautions. Your doctor should know (but if he doesn't, have him call Baxter directly) that Baxter produces a product that is the lowest IgA content available. (At least the last I heard it was). That's the product I would recommend. Also, I recommend that you have on hand the Immune Deficiency Foundation's Patient and Family Handbook. It will explain the difference between IgA deficiency and IgG deficiency. You can get it by calling 1-800-296-4433. Hope that helps, In His service, dale > We are considering a trial course of IV or sub-q IGg for her, even > though it isn't normally used in Iga deficiency. Do any of you have > low IgA kids who benefitted from IGg treatment? She - and we, her > parents - are very nervous about this. The side effects look pretty > awful, although it might be worth it if she finally had some healthy > periods in her life. > > Any thoughts or experiences would be appreciated. Thank you all for > being there. This group keeps me going through the tough > days.....like today, below zero, cold, windy, with 2 sick kids. > > Thanks! > > Betty > > __________________________________________________________ Be a better friend, newshound, and know-it-all with Mobile. Try it now. http://mobile./;_ylt=Ahu06i62sR8HDtDypao8Wcj9tAcJ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 22, 2008 Report Share Posted January 22, 2008 I would agree with you , I think his IgA is still a work in progress. It was not normal until he was about 5 but now is fairly good. He really is quite stable right now especially in the winter. I am so happy with Sub Q . He did have a nasty pneumonia chest infection in December for several weeks but a course of Zithromax and nebs cleared him up over several weeks. I think it is the worst he has sounded in years and his numbers were terrible. As guess it was just to remind me that everything is still out of wack but we in a repreive for now with the SubQ. BARBIE Re: B cells? plant4birds wrote: > > > she > has significantly low level of B cells and the b cells she has aren't > functioning properly. Can anybody help us understand what this means? > It means that even though she has total IgA deficiency -- she now has an additional diagnosis that includes non-functional IgG. B-cells are responsible for producing the antibody IgM. IgM produces the antibodies IgA and IgG. The correct treatment for non-functional or low number B-cells is IgG replacement. There are two methods of infusion - IV or Sub-cutaneous. Your doctor will start you on one or the other -- but you need to know that you have a choice in the future as to which method of administration you want to use. The side effects for IVIG are higher because you infuse a larger amount each time - less frequently. The SCIG is infused more frequently, but in smaller amounts and not directly into the blood stream. Most of the time when a parent is worried about side-effects of IVIG I tell them that there is absolutely nothing to worry about. All the side effects are treatable with minor adjustments. But, there is ONE case that is worrisome -- that's when a person has built anti-IgA antibodies. The only person who can build IgA antibodies is a person who has zero IgA. (Not every zero IgA person builds antibodies to IgA - but some do and those are the people who can have really nasty side-effects and must be monitored very, very closely). So, yes, you are right in being concerned about her possible side-effects. I believe there are tests that can be run to determine if she has built those antibodies. Your doctor will need to check that very carefully before infusing her because all IgG products contain small amounts of IgA. If she has developed anti-IgA antibodies, (not all IgA deficient patients do) she will have increased side effects and need for precautions. Your doctor should know (but if he doesn't, have him call Baxter directly) that Baxter produces a product that is the lowest IgA content available. (At least the last I heard it was). That's the product I would recommend. Also, I recommend that you have on hand the Immune Deficiency Foundation's Patient and Family Handbook. It will explain the difference between IgA deficiency and IgG deficiency. You can get it by calling 1-800-296-4433. Hope that helps, In His service, dale > We are considering a trial course of IV or sub-q IGg for her, even > though it isn't normally used in Iga deficiency. Do any of you have > low IgA kids who benefitted from IGg treatment? She - and we, her > parents - are very nervous about this. The side effects look pretty > awful, although it might be worth it if she finally had some healthy > periods in her life. > > Any thoughts or experiences would be appreciated. Thank you all for > being there. This group keeps me going through the tough > days.....like today, below zero, cold, windy, with 2 sick kids. > > Thanks! > > Betty > > ____________ _________ _________ _________ _________ _________ _ Be a better friend, newshound, and know-it-all with Mobile. Try it now. http://mobile. / ;_ylt=Ahu06i62sR 8HDtDypao8Wcj9tA cJ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 22, 2008 Report Share Posted January 22, 2008 I would agree with you , I think his IgA is still a work in progress. It was not normal until he was about 5 but now is fairly good. He really is quite stable right now especially in the winter. I am so happy with Sub Q . He did have a nasty pneumonia chest infection in December for several weeks but a course of Zithromax and nebs cleared him up over several weeks. I think it is the worst he has sounded in years and his numbers were terrible. As guess it was just to remind me that everything is still out of wack but we in a repreive for now with the SubQ. BARBIE Re: B cells? plant4birds wrote: > > > she > has significantly low level of B cells and the b cells she has aren't > functioning properly. Can anybody help us understand what this means? > It means that even though she has total IgA deficiency -- she now has an additional diagnosis that includes non-functional IgG. B-cells are responsible for producing the antibody IgM. IgM produces the antibodies IgA and IgG. The correct treatment for non-functional or low number B-cells is IgG replacement. There are two methods of infusion - IV or Sub-cutaneous. Your doctor will start you on one or the other -- but you need to know that you have a choice in the future as to which method of administration you want to use. The side effects for IVIG are higher because you infuse a larger amount each time - less frequently. The SCIG is infused more frequently, but in smaller amounts and not directly into the blood stream. Most of the time when a parent is worried about side-effects of IVIG I tell them that there is absolutely nothing to worry about. All the side effects are treatable with minor adjustments. But, there is ONE case that is worrisome -- that's when a person has built anti-IgA antibodies. The only person who can build IgA antibodies is a person who has zero IgA. (Not every zero IgA person builds antibodies to IgA - but some do and those are the people who can have really nasty side-effects and must be monitored very, very closely). So, yes, you are right in being concerned about her possible side-effects. I believe there are tests that can be run to determine if she has built those antibodies. Your doctor will need to check that very carefully before infusing her because all IgG products contain small amounts of IgA. If she has developed anti-IgA antibodies, (not all IgA deficient patients do) she will have increased side effects and need for precautions. Your doctor should know (but if he doesn't, have him call Baxter directly) that Baxter produces a product that is the lowest IgA content available. (At least the last I heard it was). That's the product I would recommend. Also, I recommend that you have on hand the Immune Deficiency Foundation's Patient and Family Handbook. It will explain the difference between IgA deficiency and IgG deficiency. You can get it by calling 1-800-296-4433. Hope that helps, In His service, dale > We are considering a trial course of IV or sub-q IGg for her, even > though it isn't normally used in Iga deficiency. Do any of you have > low IgA kids who benefitted from IGg treatment? She - and we, her > parents - are very nervous about this. The side effects look pretty > awful, although it might be worth it if she finally had some healthy > periods in her life. > > Any thoughts or experiences would be appreciated. Thank you all for > being there. This group keeps me going through the tough > days.....like today, below zero, cold, windy, with 2 sick kids. > > Thanks! > > Betty > > ____________ _________ _________ _________ _________ _________ _ Be a better friend, newshound, and know-it-all with Mobile. Try it now. http://mobile. / ;_ylt=Ahu06i62sR 8HDtDypao8Wcj9tA cJ Quote Link to comment Share on other sites More sharing options...
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