Guest guest Posted May 21, 2006 Report Share Posted May 21, 2006 This is a big concern, but I was under the impression that (if you take out the safety element for a minute) the IVIG was more successful than the IMGG for autism (even though the IVIG is still considered extremely controversial for autism). Is there supportive data for the IGMM? Also, I asked this on the previous post, but how painful are these shots? - <thecolemans4@...> wrote: Repost w/comments from Cheryl regarding the choices between IVIG and IMGG.... Our children don't have the type of immune defects that cause life threatening illnesses. In those cases the benefits outweigh the risks. For our children the known risks (no matter how small) and the unknown risks (emerging pathogens) don't outweigh any potential benefit. Cheryl ------------------------------------------------------------------ Thromb Res 2002 Oct 31;107 Suppl:S39 Related Articles, Links Virus safety of human blood, plasma, and derived products. Guertler L. Friedrich Loeffler Institute for Medical Microbiology, University of Greifswald, Luther Strasse 6, D-17489, Greifswald, Germany The reconstitution of blood and its components is hampered by factors of compatibility, availability, and the risk of transmission of infectious diseases. Protozoal agents such as plasmodium malariae and trypanosoma cruzi are only regionally relevant. Bacterial transmissions are easy to prevent and treat. Antibody, antigen, and nucleic acid screening have been implemented to prevent transmission of blood-borne viruses. Transfusion-relevant viruses include hepatitis B and C virus (HBV and HCV), human immunodeficiency virus (HIV), human T leukemia virus (HTLV-I), and in certain circumstances, parvovirus B19, hepatitis A virus (HAV), and cytomegalovirus (CMV).Of great concern is the possible transmission of prion protein causing transmissible spongiform encephalopathy. Of future interest will be whether other viruses such as Nipah and Hendra virus are blood-borne and whether viruses such as TT, SEN, and GBV-C are involved in diseases or their progression, while not causing hepatitis. PMID: 12379292 [PubMed - in process] Br J Haematol 2002 Sep;118(4):1187-9 Life-threatening human parvovirus B19 infection transmitted by intravenous immune globulin. Hayakawa F, Imada K, Towatari M, Saito H. First Department of Internal Medicine, Nagoya University School of Medicine, Nagoya, and Toyota Medical Corporation Kariya General Hospital, Kariya, Japan. Infection of human parvovirus B19 (B19) is usually a self-limiting febrile illness, but can sometimes be life-threatening under certain circumstances, such as aplastic crisis in patients with haemolytic anaemia, hydrops fetalis in pregnant women and fulminant hepatitis. B19 canbe transmitted through respiratory secretions, transplacentally and by transfusion of blood or blood products. In the present case, administration of intravenous immune globulin (i.v.Ig) transmitted B19 infection and consequently caused pure red cell aplasia and aggravation of hepatitis to fulminant hepatitis. Our case may raise important questions as to the safety of i.v.Ig and possible contamination by B19. PMID: 12199806 [PubMed - in process] Transfus Med 2002 Aug;12(4):275-83 Related Articles, Links Nucleic acid testing for emerging viral infections. Allain JP, I, Sauleda S. Division of Transfusion Medicine, Department of Haematology, East Anglia Blood Centre, Cambridge, UK. jpa1000@... The development of new technologies leads to the discovery of new viruses. For each of these new infectious agents, relevance to transfusion, including transmissibility by transfusion, pathogenicity, prevalence in blood donors, persistence and the availability of screening assays needs to be assessed. Since 1995, one virus and a new family of viruses have been identified. GB virus-C/hepatitis G virus (GBV-C/HGV), a flavi virus with some homology with and epidemiological features of HCV, is not related to post-transfusion hepatitis but seems to positively interfere with human immunodeficiency virus replication. Human circoviruses include TT virus (TTV) and SEN-V. Both are highly variable, constituting a large family of distantly related viruses. They appear ubiquitous, infecting humans very early in life and are largely persistent. No clinical symptoms or pathogenicity is associated with TTV, but SEN-V might be associated with some non-A-E post-transfusion hepatitis. Parvovirus B19 has been known for many years, but its transmission to recipients of plasma derivatives despite viral inactivation raised the issue of screening plasma pools by nucleic acid testing. Most fractionators quantify B19 DNA in plasma pools to ensure a viral load of <10(4) IU mL-1. PMID: 12220257 [PubMed - in process] J Virol Methods 2002 Jun;104(1):59-67 Related Articles, Links Real-time PCR methods for independent quantitation of TTV and TLMV. Moen EM, Sleboda J, Grinde B. Department of Virology, National Institute of Public Health, P.O. Box 4404 Nydalen, N-0403, Oslo, Norway. There is considerable interest in the possible clinical effects of the human circoviruses TT virus (TTV) and TTV-like mini virus (TLMV). Most people appear to have at least one of these viruses replicating actively in their bodies, thus mere correlation of the presence of virus and disease states are probably less informative than a quantitative analysis of viraemia. Real-time PCR based methods, with either SYBR Green or TaqMan probe, designed to quantitate selectively TTV and TLMV are described. The suggested TaqMan-based protocols were suitable for quantitation of viruses in the range of 10(2)-10(9) copies/ml of sample; and proved, by sequencing of PCR products, to be specific for each of the two viruses. PMID: 12020793 [PubMed - indexed for MEDLINE] Boneva RS, Grindon AJ, Orton SL, Switzer WM, Shanmugam V, Hussain AI, Bhullar VB, Chamberland ME, Heneine W, Folks TM, Chapman LE. Related Articles, Links Simian foamy virus infection in a blood donor. Transfusion. 2002 Jul;42(7):886-91. PMID: 12375661 [PubMed - indexed for MEDLINE] 3: JI, Rud EW, Pilon RG, JM, Switzer WM, Sandstrom PA. Related Articles, Links Cross-species retroviral transmission from macaques to human beings. Lancet. 2002 Aug 3;360(9330):387-8. PMID: 12241782 [PubMed - indexed for MEDLINE] : Herwaldt BL, Neitzel DF, Gorlin JB, Jensen KA, EH, Peglow WR, Slemenda SB, Won KY, Nace EK, Pieniazek NJ, M. Related Articles, Links Transmission of Babesia microti in Minnesota through four blood donations from the same donor over a 6-month period. Transfusion. 2002 Sep;42(9):1154-8. PMID: 12430672 [PubMed - indexed for MEDLINE] [No authors listed] Investigations of West Nile virus infections in recipients of blood transfusions. MMWR Morb Mortal Wkly Rep. 2002 Nov 1;51(43):973-4. PMID: 12433022 [PubMed - indexed for MEDLINE] __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 22, 2006 Report Share Posted May 22, 2006 We did IMGG on my son for about one year. He was 5-6 years old at the time without much language so he couldn't tell me about it. He did cry but got the the point where he wouldn't fuss, just rub his thigh for a little while after- always had to hold him down, but we still have to (barely) for blood work. (He's almost 8). We followed with a gift from the " present basket " (stickers, bath toys, etc- cheapies) of his choosing. And gave him his bath soon after so he could soak. It was only about every three weeks to administer and lucky my mother who lives here used to be an RN- I could never have done it myself. I'm not a needle person- don't even have my ears pierced. - in Mobile, AL Reality lies beyond the horizon... Wonderwegian Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 22, 2006 Report Share Posted May 22, 2006 IMGG shots are painful - the shot is quite viscous and requires a thicker guage needle - it also needs to be longer to get into the muscle...having said that, preparation of the injection site with EMLA cream about an hour before made a huge difference. We used IMGG for about 18 months, every 6 weeks (2002 - 2004). This was in conjunction with Kutapressin till it vanished, as well as Famvir. We think it played a major role in stabilising our son's immune system. (I have charted all his bloodwork..and at least there is coincidental evidence) The effect that we believe that this has had on his brain blood perfusion is profound...his first neurospect in Jan 2002 showed marked hypoperfusion in the left temporal lobe. In May 2005, his second neurospect showed " restoration of blood perfusion to the left temporal lobe " . The right lobe was OK both times. He had other areas of hyperperfusion which have actually reduced. We are now seeing launguage integration and a much greater desire, willingness and ability to communicate using language! There is still a lot of work to do...however getting the immune system under control and the brain healthier are key. ImGG shots are very useful for some children. Neurospects are a vital tool for Dr Goldberg in treatment for some children - especially as an aid to fine tuning the use of medications like SSRI's, effexor, or wellbutrin or Strattera etc. Dr G may not use these tools for all kids either. Hope this helps you .. get that paperwork in.. but don't worry, you may not need to have ImGG's or a neurospect! best wishes > Repost w/comments from Cheryl regarding the choices > between IVIG and IMGG.... > > > Our children don't have the type of immune defects > that cause life > threatening illnesses. In those cases the benefits > outweigh the risks. > > For our children the known risks (no matter how small) > and the unknown risks > (emerging pathogens) don't outweigh any potential > benefit. > Cheryl > ------------------------------------------------------------------ > Thromb Res 2002 Oct 31;107 Suppl:S39 Related Articles, > Links > > > Virus safety of human blood, plasma, and derived > products. > > Guertler L. > > Friedrich Loeffler Institute for Medical Microbiology, > University of > Greifswald, Luther Strasse 6, D-17489, > Greifswald, Germany > > The reconstitution of blood and its components is > hampered by factors of > compatibility, availability, and the risk of > transmission of infectious > diseases. Protozoal agents such as plasmodium malariae > and trypanosoma cruzi > are only regionally relevant. Bacterial transmissions > are easy to prevent > and treat. Antibody, antigen, and nucleic acid > screening have been > implemented to prevent transmission of blood-borne > viruses. > Transfusion-relevant viruses include hepatitis B and C > virus (HBV and HCV), > human immunodeficiency virus (HIV), human T leukemia > virus (HTLV-I), and in > certain circumstances, parvovirus B19, hepatitis A > virus (HAV), and > cytomegalovirus (CMV).Of great concern is the possible > transmission of prion > protein causing transmissible spongiform > encephalopathy. Of future interest > will be whether other viruses such as Nipah and Hendra > virus are blood-borne > and whether viruses such as TT, SEN, and GBV-C are > involved in diseases or > their progression, while not causing hepatitis. > > PMID: 12379292 [PubMed - in process] > > > Br J Haematol 2002 Sep;118(4):1187-9 > > > Life-threatening human parvovirus B19 infection > transmitted by intravenous > immune globulin. > > Hayakawa F, Imada K, Towatari M, Saito H. > > First Department of Internal Medicine, Nagoya > University School of Medicine, > Nagoya, and Toyota Medical Corporation Kariya General > Hospital, Kariya, > Japan. > > Infection of human parvovirus B19 (B19) is usually a > self-limiting febrile > illness, but can sometimes be life-threatening under > certain circumstances, > such as aplastic crisis in patients with haemolytic > anaemia, hydrops fetalis > in pregnant women and fulminant hepatitis. B19 canbe > transmitted through > respiratory secretions, transplacentally and by > transfusion of blood or > blood products. In the present case, administration of > intravenous immune > globulin (i.v.Ig) transmitted B19 infection and > consequently caused pure red > cell aplasia and aggravation of hepatitis to fulminant > hepatitis. Our case > may raise important questions as to the safety of > i.v.Ig and possible > contamination by B19. > > PMID: 12199806 [PubMed - in process] > > > Transfus Med 2002 Aug;12(4):275-83 Related Articles, > Links > > > Nucleic acid testing for emerging viral infections. > > Allain JP, I, Sauleda S. > > Division of Transfusion Medicine, Department of > Haematology, East Anglia > Blood Centre, Cambridge, UK. jpa1000@... > > The development of new technologies leads to the > discovery of new viruses. > For each of these new infectious agents, relevance to > transfusion, including > transmissibility by transfusion, pathogenicity, > prevalence in blood donors, > persistence and the availability of screening assays > needs to be assessed. > Since 1995, one virus and a new family of viruses have > been identified. GB > virus-C/hepatitis G virus (GBV-C/HGV), a flavi virus > with some homology with > and epidemiological features of HCV, is not related to > post-transfusion > hepatitis but seems to positively interfere with human > immunodeficiency > virus replication. Human circoviruses include TT virus > (TTV) and SEN-V. Both > are highly variable, constituting a large family of > distantly related > viruses. They appear ubiquitous, infecting humans very > early in life and are > largely persistent. No clinical symptoms or > pathogenicity is associated with > TTV, but SEN-V might be associated with some non-A-E > post-transfusion > hepatitis. Parvovirus B19 has been known for many > years, but its > transmission to recipients of plasma derivatives > despite viral inactivation > raised the issue of screening plasma pools by nucleic > acid testing. Most > fractionators quantify B19 DNA in plasma pools to > ensure a viral load of > <10(4) IU mL-1. > > PMID: 12220257 [PubMed - in process] > > J Virol Methods 2002 Jun;104(1):59-67 Related > Articles, Links > > > Real-time PCR methods for independent quantitation of > TTV and TLMV. > > Moen EM, Sleboda J, Grinde B. > > Department of Virology, National Institute of Public > Health, P.O. Box 4404 > Nydalen, N-0403, Oslo, Norway. > > There is considerable interest in the possible > clinical effects of the human > circoviruses TT virus (TTV) and TTV-like mini virus > (TLMV). Most people > appear to have at least one of these viruses > replicating actively in their > bodies, thus mere correlation of the presence of virus > and disease states > are probably less informative than a quantitative > analysis of viraemia. > Real-time PCR based methods, with either SYBR Green or > TaqMan probe, > designed to quantitate selectively TTV and TLMV are > described. The suggested > TaqMan-based protocols were suitable for quantitation > of viruses in the > range of 10(2)-10(9) copies/ml of sample; and proved, > by sequencing of PCR > products, to be specific for each of the two viruses. > > PMID: 12020793 [PubMed - indexed for MEDLINE] > > > Boneva RS, Grindon AJ, Orton SL, Switzer WM, Shanmugam > V, Hussain AI, > Bhullar VB, Chamberland ME, Heneine W, Folks TM, > Chapman LE. Related > Articles, Links > > Simian foamy virus infection in a blood donor. > Transfusion. 2002 Jul;42(7):886-91. > PMID: 12375661 [PubMed - indexed for MEDLINE] > > 3: JI, Rud EW, Pilon RG, JM, Switzer WM, > Sandstrom PA. Related > Articles, Links > > Cross-species retroviral transmission from macaques to > human beings. > Lancet. 2002 Aug 3;360(9330):387-8. > PMID: 12241782 [PubMed - indexed for MEDLINE] > > : Herwaldt BL, Neitzel DF, Gorlin JB, Jensen KA, > EH, Peglow WR, > Slemenda SB, Won KY, Nace EK, Pieniazek NJ, M. > Related Articles, > Links > > Transmission of Babesia microti in Minnesota through > four blood donations > from the same donor over a 6-month period. > Transfusion. 2002 Sep;42(9):1154-8. > PMID: 12430672 [PubMed - indexed for MEDLINE] > > [No authors listed] > Investigations of West Nile virus infections in > recipients of blood > transfusions. > MMWR Morb Mortal Wkly Rep. 2002 Nov 1;51(43):973-4. > PMID: 12433022 [PubMed - indexed for MEDLINE] > > > > > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 22, 2006 Report Share Posted May 22, 2006 Actually, the shots were every 3 weeks - thanks for reminding me in your post..shows how easily one can forget the less pleasant aspects of this treatments! > > Repost w/comments from Cheryl regarding the choices > > between IVIG and IMGG.... > > > > > > Our children don't have the type of immune defects > > that cause life > > threatening illnesses. In those cases the benefits > > outweigh the risks. > > > > For our children the known risks (no matter how small) > > and the unknown risks > > (emerging pathogens) don't outweigh any potential > > benefit. > > Cheryl > > ----------------------------------------------------------------- - > > Thromb Res 2002 Oct 31;107 Suppl:S39 Related Articles, > > Links > > > > > > Virus safety of human blood, plasma, and derived > > products. > > > > Guertler L. > > > > Friedrich Loeffler Institute for Medical Microbiology, > > University of > > Greifswald, Luther Strasse 6, D-17489, > > Greifswald, Germany > > > > The reconstitution of blood and its components is > > hampered by factors of > > compatibility, availability, and the risk of > > transmission of infectious > > diseases. Protozoal agents such as plasmodium malariae > > and trypanosoma cruzi > > are only regionally relevant. Bacterial transmissions > > are easy to prevent > > and treat. Antibody, antigen, and nucleic acid > > screening have been > > implemented to prevent transmission of blood-borne > > viruses. > > Transfusion-relevant viruses include hepatitis B and C > > virus (HBV and HCV), > > human immunodeficiency virus (HIV), human T leukemia > > virus (HTLV-I), and in > > certain circumstances, parvovirus B19, hepatitis A > > virus (HAV), and > > cytomegalovirus (CMV).Of great concern is the possible > > transmission of prion > > protein causing transmissible spongiform > > encephalopathy. Of future interest > > will be whether other viruses such as Nipah and Hendra > > virus are blood-borne > > and whether viruses such as TT, SEN, and GBV-C are > > involved in diseases or > > their progression, while not causing hepatitis. > > > > PMID: 12379292 [PubMed - in process] > > > > > > Br J Haematol 2002 Sep;118(4):1187-9 > > > > > > Life-threatening human parvovirus B19 infection > > transmitted by intravenous > > immune globulin. > > > > Hayakawa F, Imada K, Towatari M, Saito H. > > > > First Department of Internal Medicine, Nagoya > > University School of Medicine, > > Nagoya, and Toyota Medical Corporation Kariya General > > Hospital, Kariya, > > Japan. > > > > Infection of human parvovirus B19 (B19) is usually a > > self-limiting febrile > > illness, but can sometimes be life-threatening under > > certain circumstances, > > such as aplastic crisis in patients with haemolytic > > anaemia, hydrops fetalis > > in pregnant women and fulminant hepatitis. B19 canbe > > transmitted through > > respiratory secretions, transplacentally and by > > transfusion of blood or > > blood products. In the present case, administration of > > intravenous immune > > globulin (i.v.Ig) transmitted B19 infection and > > consequently caused pure red > > cell aplasia and aggravation of hepatitis to fulminant > > hepatitis. Our case > > may raise important questions as to the safety of > > i.v.Ig and possible > > contamination by B19. > > > > PMID: 12199806 [PubMed - in process] > > > > > > Transfus Med 2002 Aug;12(4):275-83 Related Articles, > > Links > > > > > > Nucleic acid testing for emerging viral infections. > > > > Allain JP, I, Sauleda S. > > > > Division of Transfusion Medicine, Department of > > Haematology, East Anglia > > Blood Centre, Cambridge, UK. jpa1000@ > > > > The development of new technologies leads to the > > discovery of new viruses. > > For each of these new infectious agents, relevance to > > transfusion, including > > transmissibility by transfusion, pathogenicity, > > prevalence in blood donors, > > persistence and the availability of screening assays > > needs to be assessed. > > Since 1995, one virus and a new family of viruses have > > been identified. GB > > virus-C/hepatitis G virus (GBV-C/HGV), a flavi virus > > with some homology with > > and epidemiological features of HCV, is not related to > > post-transfusion > > hepatitis but seems to positively interfere with human > > immunodeficiency > > virus replication. Human circoviruses include TT virus > > (TTV) and SEN-V. Both > > are highly variable, constituting a large family of > > distantly related > > viruses. They appear ubiquitous, infecting humans very > > early in life and are > > largely persistent. No clinical symptoms or > > pathogenicity is associated with > > TTV, but SEN-V might be associated with some non-A-E > > post-transfusion > > hepatitis. Parvovirus B19 has been known for many > > years, but its > > transmission to recipients of plasma derivatives > > despite viral inactivation > > raised the issue of screening plasma pools by nucleic > > acid testing. Most > > fractionators quantify B19 DNA in plasma pools to > > ensure a viral load of > > <10(4) IU mL-1. > > > > PMID: 12220257 [PubMed - in process] > > > > J Virol Methods 2002 Jun;104(1):59-67 Related > > Articles, Links > > > > > > Real-time PCR methods for independent quantitation of > > TTV and TLMV. > > > > Moen EM, Sleboda J, Grinde B. > > > > Department of Virology, National Institute of Public > > Health, P.O. Box 4404 > > Nydalen, N-0403, Oslo, Norway. > > > > There is considerable interest in the possible > > clinical effects of the human > > circoviruses TT virus (TTV) and TTV-like mini virus > > (TLMV). Most people > > appear to have at least one of these viruses > > replicating actively in their > > bodies, thus mere correlation of the presence of virus > > and disease states > > are probably less informative than a quantitative > > analysis of viraemia. > > Real-time PCR based methods, with either SYBR Green or > > TaqMan probe, > > designed to quantitate selectively TTV and TLMV are > > described. The suggested > > TaqMan-based protocols were suitable for quantitation > > of viruses in the > > range of 10(2)-10(9) copies/ml of sample; and proved, > > by sequencing of PCR > > products, to be specific for each of the two viruses. > > > > PMID: 12020793 [PubMed - indexed for MEDLINE] > > > > > > Boneva RS, Grindon AJ, Orton SL, Switzer WM, Shanmugam > > V, Hussain AI, > > Bhullar VB, Chamberland ME, Heneine W, Folks TM, > > Chapman LE. Related > > Articles, Links > > > > Simian foamy virus infection in a blood donor. > > Transfusion. 2002 Jul;42(7):886-91. > > PMID: 12375661 [PubMed - indexed for MEDLINE] > > > > 3: JI, Rud EW, Pilon RG, JM, Switzer WM, > > Sandstrom PA. Related > > Articles, Links > > > > Cross-species retroviral transmission from macaques to > > human beings. > > Lancet. 2002 Aug 3;360(9330):387-8. > > PMID: 12241782 [PubMed - indexed for MEDLINE] > > > > : Herwaldt BL, Neitzel DF, Gorlin JB, Jensen KA, > > EH, Peglow WR, > > Slemenda SB, Won KY, Nace EK, Pieniazek NJ, M. > > Related Articles, > > Links > > > > Transmission of Babesia microti in Minnesota through > > four blood donations > > from the same donor over a 6-month period. > > Transfusion. 2002 Sep;42(9):1154-8. > > PMID: 12430672 [PubMed - indexed for MEDLINE] > > > > [No authors listed] > > Investigations of West Nile virus infections in > > recipients of blood > > transfusions. > > MMWR Morb Mortal Wkly Rep. 2002 Nov 1;51(43):973-4. > > PMID: 12433022 [PubMed - indexed for MEDLINE] > > > > > > > > > > > > __________________________________________________ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 27, 2006 Report Share Posted May 27, 2006 Just curious who decided this (the " our kids... " statement below).. My son's immune deficiency dx is new, so I am still exploring. His local immunologist says he should receive IVIG. I just got back from the IVIG/Autism expert (Gupta), who agreed, but explained that the therapeutic dose for autism was double the normal dose. He went over all of the risks with us, and quite frankly I found them to be very small considering 1 million people in this country receive IVIG monthly with no contaminations reported since 1994. This could be an ideal avenue for my son who's oral aversions are so severe that we do not ever have luck with supplements or meds. I have asked the research librarian at our children's hospital to put together the studies for me comparing IVIG to IMGG and also there is a continuous sub-Q administration that I am completely unfamiliar with. On my own, I see that the IMGG does not compare at all to the IVIG for keeping the blood levels normal, but I recognize some of you have had good results with the shots none-the-less. I have plenty of time to research this as my insurance will be fighting this expensive treatment option I have been forwarned! They will most likely not pay for the therapeutic autism dose -- only the standard dose. - <thecolemans4@...> wrote: Repost w/comments from Cheryl regarding the choices between IVIG and IMGG.... Our children don't have the type of immune defects that cause life threatening illnesses. In those cases the benefits outweigh the risks. For our children the known risks (no matter how small) and the unknown risks (emerging pathogens) don't outweigh any potential benefit. Cheryl ------------------------------------------------------------------ Thromb Res 2002 Oct 31;107 Suppl:S39 Related Articles, Links Virus safety of human blood, plasma, and derived products. Guertler L. Friedrich Loeffler Institute for Medical Microbiology, University of Greifswald, Luther Strasse 6, D-17489, Greifswald, Germany The reconstitution of blood and its components is hampered by factors of compatibility, availability, and the risk of transmission of infectious diseases. Protozoal agents such as plasmodium malariae and trypanosoma cruzi are only regionally relevant. Bacterial transmissions are easy to prevent and treat. Antibody, antigen, and nucleic acid screening have been implemented to prevent transmission of blood-borne viruses. Transfusion-relevant viruses include hepatitis B and C virus (HBV and HCV), human immunodeficiency virus (HIV), human T leukemia virus (HTLV-I), and in certain circumstances, parvovirus B19, hepatitis A virus (HAV), and cytomegalovirus (CMV).Of great concern is the possible transmission of prion protein causing transmissible spongiform encephalopathy. Of future interest will be whether other viruses such as Nipah and Hendra virus are blood-borne and whether viruses such as TT, SEN, and GBV-C are involved in diseases or their progression, while not causing hepatitis. PMID: 12379292 [PubMed - in process] Br J Haematol 2002 Sep;118(4):1187-9 Life-threatening human parvovirus B19 infection transmitted by intravenous immune globulin. Hayakawa F, Imada K, Towatari M, Saito H. First Department of Internal Medicine, Nagoya University School of Medicine, Nagoya, and Toyota Medical Corporation Kariya General Hospital, Kariya, Japan. Infection of human parvovirus B19 (B19) is usually a self-limiting febrile illness, but can sometimes be life-threatening under certain circumstances, such as aplastic crisis in patients with haemolytic anaemia, hydrops fetalis in pregnant women and fulminant hepatitis. B19 canbe transmitted through respiratory secretions, transplacentally and by transfusion of blood or blood products. In the present case, administration of intravenous immune globulin (i.v.Ig) transmitted B19 infection and consequently caused pure red cell aplasia and aggravation of hepatitis to fulminant hepatitis. Our case may raise important questions as to the safety of i.v.Ig and possible contamination by B19. PMID: 12199806 [PubMed - in process] Transfus Med 2002 Aug;12(4):275-83 Related Articles, Links Nucleic acid testing for emerging viral infections. Allain JP, I, Sauleda S. Division of Transfusion Medicine, Department of Haematology, East Anglia Blood Centre, Cambridge, UK. jpa1000@... The development of new technologies leads to the discovery of new viruses. For each of these new infectious agents, relevance to transfusion, including transmissibility by transfusion, pathogenicity, prevalence in blood donors, persistence and the availability of screening assays needs to be assessed. Since 1995, one virus and a new family of viruses have been identified. GB virus-C/hepatitis G virus (GBV-C/HGV), a flavi virus with some homology with and epidemiological features of HCV, is not related to post-transfusion hepatitis but seems to positively interfere with human immunodeficiency virus replication. Human circoviruses include TT virus (TTV) and SEN-V. Both are highly variable, constituting a large family of distantly related viruses. They appear ubiquitous, infecting humans very early in life and are largely persistent. No clinical symptoms or pathogenicity is associated with TTV, but SEN-V might be associated with some non-A-E post-transfusion hepatitis. Parvovirus B19 has been known for many years, but its transmission to recipients of plasma derivatives despite viral inactivation raised the issue of screening plasma pools by nucleic acid testing. Most fractionators quantify B19 DNA in plasma pools to ensure a viral load of <10(4) IU mL-1. PMID: 12220257 [PubMed - in process] J Virol Methods 2002 Jun;104(1):59-67 Related Articles, Links Real-time PCR methods for independent quantitation of TTV and TLMV. Moen EM, Sleboda J, Grinde B. Department of Virology, National Institute of Public Health, P.O. Box 4404 Nydalen, N-0403, Oslo, Norway. There is considerable interest in the possible clinical effects of the human circoviruses TT virus (TTV) and TTV-like mini virus (TLMV). Most people appear to have at least one of these viruses replicating actively in their bodies, thus mere correlation of the presence of virus and disease states are probably less informative than a quantitative analysis of viraemia. Real-time PCR based methods, with either SYBR Green or TaqMan probe, designed to quantitate selectively TTV and TLMV are described. The suggested TaqMan-based protocols were suitable for quantitation of viruses in the range of 10(2)-10(9) copies/ml of sample; and proved, by sequencing of PCR products, to be specific for each of the two viruses. PMID: 12020793 [PubMed - indexed for MEDLINE] Boneva RS, Grindon AJ, Orton SL, Switzer WM, Shanmugam V, Hussain AI, Bhullar VB, Chamberland ME, Heneine W, Folks TM, Chapman LE. Related Articles, Links Simian foamy virus infection in a blood donor. Transfusion. 2002 Jul;42(7):886-91. PMID: 12375661 [PubMed - indexed for MEDLINE] 3: JI, Rud EW, Pilon RG, JM, Switzer WM, Sandstrom PA. Related Articles, Links Cross-species retroviral transmission from macaques to human beings. Lancet. 2002 Aug 3;360(9330):387-8. PMID: 12241782 [PubMed - indexed for MEDLINE] : Herwaldt BL, Neitzel DF, Gorlin JB, Jensen KA, EH, Peglow WR, Slemenda SB, Won KY, Nace EK, Pieniazek NJ, M. Related Articles, Links Transmission of Babesia microti in Minnesota through four blood donations from the same donor over a 6-month period. Transfusion. 2002 Sep;42(9):1154-8. PMID: 12430672 [PubMed - indexed for MEDLINE] [No authors listed] Investigations of West Nile virus infections in recipients of blood transfusions. MMWR Morb Mortal Wkly Rep. 2002 Nov 1;51(43):973-4. PMID: 12433022 [PubMed - indexed for MEDLINE] __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 28, 2006 Report Share Posted May 28, 2006 Hey , I think the " our kids " statement begins with Dr G referring to patients in his practice, and that others pick up that phrase when discussing patients diagnosed with . The statement that they don't have the type of def... is a broad one, because yes, a few that develop autism do. However, overall, that is Dr G's general standing on his preference to IMGG over IVIG. So when discussing these therapies, we are basically putting out there the opinions that we've absorbed in our discussions with Dr G. Also, I think his negative comments also refer to the idea of using IVIG as a widespread long-term therapy for all of these kids, that a better solution than this must be found. (At least the positive results and findings of IVIG are yet another proof that this is an immune dysfunction in autism!) I wanted to share as much as I can remember from the debates on the benefits vs risks, etc, mostly to show that Dr G has his reasons for his choice. I don't know anything about your child's immune deficiency, though, so this is just 'in general' (like should all kids w/autism get IVIG?). Just know I'm not trying in any way to argue your decision or choice. When your child is so sick and you have an option to have a speedier impact, I can see the appeal. I have not followed the results of children going thru these therapies. It is an individual parental choice, and we want to provide parents info on all options. " Out there " , you are always going to be given reasons why IVIG is better, so here, you will hear about the other option and why it is also a good choice, as well as why it is Dr G's preference. He also is concerned about the possibility of infections due to the widespread problems in the CFS community with such, and the fact that kids are more prone to picking up chronic latent infections than the properly functioning immune system. But he has not said that it WILL happen, just that we don't truly know that it won't. He said (I can't quote exactly, just a 2 yr old memory of a statement) that there are viruses we haven't even discovered yet (including herpesviruses 8 & 9 and maybe more) that we cannot even screen for, so there is no way anyone can make the statement that it's tested free of viruses. I think that is Dr G's biggest deterrent in using this as a *widespread* therapy (not to mention the supply problem and the resistance there would be to that). Other pro-arguments for IMGG I've heard mentioned were significance of cost difference, the supply availability of IVIG (as in it can run in shortage and ethically should be saved for those w/life threatening illness), potential severity of symptoms during therapy (that do resolve but can be pretty miserable for a child, not that the shot doesn't hurt too, but probably no more than an IV), being in the hospital for it, and that IVIG results are not long-lived and often require multiple treatments, that the financial cost does not outweigh the benefits if the child is on the entire treatment. Dr G has given me the impression that it is frankly not worth it, that the overall combination of medicines The difference between risk of infection being greater if given IV than intramuscular is only theoretical as far as I know. I would love it if you would post your findings when you research the differences in IVIG vs IMGG, or at least send them to me. Again, my comments aren't meant to be directed at you or to sway you any, but just 'in general' regarding some of Dr G's reasons for his choices and opinions. They sure do vary widely 'out there'! --- Rob or Sunseri <RobRose@...> wrote: > Just curious who decided this (the " our kids... " > statement below).. > > My son's immune deficiency dx is new, so I am > still exploring. His local immunologist says he > should receive IVIG. I just got back from the > IVIG/Autism expert (Gupta), who agreed, but > explained that the therapeutic dose for autism was > double the normal dose. He went over all of the > risks with us, and quite frankly I found them to be > very small considering 1 million people in this > country receive IVIG monthly with no contaminations > reported since 1994. This could be an ideal avenue > for my son who's oral aversions are so severe that > we do not ever have luck with supplements or meds. > > I have asked the research librarian at our > children's hospital to put together the studies for > me comparing IVIG to IMGG and also there is a > continuous sub-Q administration that I am completely > unfamiliar with. On my own, I see that the IMGG > does not compare at all to the IVIG for keeping the > blood levels normal, but I recognize some of you > have had good results with the shots none-the-less. > > I have plenty of time to research this as my > insurance will be fighting this expensive treatment > option I have been forwarned! They will most likely > not pay for the therapeutic autism dose -- only the > standard dose. > > - > > <thecolemans4@...> wrote: > Repost w/comments from Cheryl regarding the > choices > between IVIG and IMGG.... > > > Our children don't have the type of immune defects > that cause life > threatening illnesses. In those cases the benefits > outweigh the risks. > > For our children the known risks (no matter how > small) and the unknown risks > (emerging pathogens) don't outweigh any potential > benefit. > Cheryl > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
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