Guest guest Posted December 9, 2003 Report Share Posted December 9, 2003 Hi, I don't really know the correlation between it and mito, but I have a primary immune deficiency, as does my older son, and my younger son is currently in the process of being "worked up" for a mito disorder. My younger son, Ash, has myopathy, weight loss, reflux, constipation and, yet, his immunoglobulins are at normal levels. My older son, Sam, makes no IgA and has an IgG subclass 2 deficiency; I have an IgA def. and a polsaccharide antibody deficiency. I do wonder about the connection. I take gammaglobulin by subcutaenous delivery - very easy, painless, and really, for what it's worth, have had none of the side effects that I had with IVIG. Do you know about the Immune Deficiency Foundation? Great place for info. and can put you in touch with other mothers of PID kids and PID grownups as well. Anne R Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 9, 2003 Report Share Posted December 9, 2003 Hi, I don't really know the correlation between it and mito, but I have a primary immune deficiency, as does my older son, and my younger son is currently in the process of being "worked up" for a mito disorder. My younger son, Ash, has myopathy, weight loss, reflux, constipation and, yet, his immunoglobulins are at normal levels. My older son, Sam, makes no IgA and has an IgG subclass 2 deficiency; I have an IgA def. and a polsaccharide antibody deficiency. I do wonder about the connection. I take gammaglobulin by subcutaenous delivery - very easy, painless, and really, for what it's worth, have had none of the side effects that I had with IVIG. Do you know about the Immune Deficiency Foundation? Great place for info. and can put you in touch with other mothers of PID kids and PID grownups as well. Anne R Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 9, 2003 Report Share Posted December 9, 2003 Hi, I don't really know the correlation between it and mito, but I have a primary immune deficiency, as does my older son, and my younger son is currently in the process of being "worked up" for a mito disorder. My younger son, Ash, has myopathy, weight loss, reflux, constipation and, yet, his immunoglobulins are at normal levels. My older son, Sam, makes no IgA and has an IgG subclass 2 deficiency; I have an IgA def. and a polsaccharide antibody deficiency. I do wonder about the connection. I take gammaglobulin by subcutaenous delivery - very easy, painless, and really, for what it's worth, have had none of the side effects that I had with IVIG. Do you know about the Immune Deficiency Foundation? Great place for info. and can put you in touch with other mothers of PID kids and PID grownups as well. Anne R Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 9, 2003 Report Share Posted December 9, 2003 Just recieved some test results for myself that show I have hypogammaglobulinemia, and was wondering how many others may have been daignosed with this too. has had testing for this and no one knows what to make of this until now. I am trying to put this all together to figure out how her illness and mine are linked...and possibly my youngest too. I know has it, but neither of us know the correlation between this and mito. Any feedback would be appreciated. Thanks, Dawn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 9, 2003 Report Share Posted December 9, 2003 my children have hypogammaglobulinemia - mainly the subclass 1 and 2 of IGg is low if I remember right. they also have significant B cell deficiency and dysfunction and no post immunization titers for many immunizations. they get IVIg on a monthly basis. I have not read anything about it being related to mito but of course assume it is. I remember that Dr. Cohen told me that B cell dysfunction is something he has seen in mito patients to an extent that seems suspicious - in other words more than he would expect it to just spontaneously occur in the general population. I don't recall him saying anything about the low IGg being common. My guess is that the boys just don't have the energy to make the immune globulins and B cells as they should.....and that is how it is related. Just like they don't have the energy to make red cells or platelets or metabolize sugar or make co q or thyroid hormone or steroids or any of the other 100 things their bodies can't do/make. I would think that is how it is related. will you be getting IVIG? Does ? Anne hypogammaglobulinemia Just recieved some test results for myself that show I have hypogammaglobulinemia, and was wondering how many others may have been daignosed with this too. has had testing for this and no one knows what to make of this until now. I am trying to put this all together to figure out how her illness and mine are linked...and possibly my youngest too. I know has it, but neither of us know the correlation between this and mito. Any feedback would be appreciated. Thanks, Dawn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 10, 2003 Report Share Posted December 10, 2003 > > > how many others may have > been daignosed with this too. > Any feedback would be > appreciated. > > Thanks, Dawn Dawn, all three of my kids have common variable immunedeficiency. It is hypogammaglobulin with T cell deficiency. All three also have mito. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 10, 2003 Report Share Posted December 10, 2003 > > > how many others may have > been daignosed with this too. > Any feedback would be > appreciated. > > Thanks, Dawn Dawn, all three of my kids have common variable immunedeficiency. It is hypogammaglobulin with T cell deficiency. All three also have mito. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 10, 2003 Report Share Posted December 10, 2003 > > > how many others may have > been daignosed with this too. > Any feedback would be > appreciated. > > Thanks, Dawn Dawn, all three of my kids have common variable immunedeficiency. It is hypogammaglobulin with T cell deficiency. All three also have mito. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 14, 2003 Report Share Posted December 14, 2003 Yes does sound a lot like the boys. I looked at her pics the other day with her siblings. She is darling Hope! Loved the one of her and her brother! Anne Re: hypogammaglobulinemiaHi Anne, has hypogamm too, but I was told by her immunoligist & Dr. Korson it was it was secondary to mito. Not sure if that's accurate or not, but that's what I have always thought as a result. She sounds so similar to your kids in so may ways!! Take good care. Hugs, Hope Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 14, 2003 Report Share Posted December 14, 2003 Yes does sound a lot like the boys. I looked at her pics the other day with her siblings. She is darling Hope! Loved the one of her and her brother! Anne Re: hypogammaglobulinemiaHi Anne, has hypogamm too, but I was told by her immunoligist & Dr. Korson it was it was secondary to mito. Not sure if that's accurate or not, but that's what I have always thought as a result. She sounds so similar to your kids in so may ways!! Take good care. Hugs, Hope Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 14, 2003 Report Share Posted December 14, 2003 Yes does sound a lot like the boys. I looked at her pics the other day with her siblings. She is darling Hope! Loved the one of her and her brother! Anne Re: hypogammaglobulinemiaHi Anne, has hypogamm too, but I was told by her immunoligist & Dr. Korson it was it was secondary to mito. Not sure if that's accurate or not, but that's what I have always thought as a result. She sounds so similar to your kids in so may ways!! Take good care. Hugs, Hope Quote Link to comment Share on other sites More sharing options...
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