**Cross posted in special needs parenting**
Background: Connor has 22q11.2 Deletion, called Velocardiofacial Syndrome or DiGeorge Syndrome. He is 3.5, still breastfed, never in daycare (although now in preschool and in lots of center-based therapies). He has had lots and lots of illnesses, including 3 pneumonias, more than a dozen haemophilus influenzae (non typeable) infections (including one that was systemic requiring 4 weeks of IV therapy), severe rota virus, two RSV infections, and dozens of other illnesses with no names.
Connor had another round of immune function testing last week and some of the results are in. He still has the expected t-cell deficit that we've always seen (and is very common in his syndrome) it is still rated as mild. But he also has low IgM. This is the second time in a row (9 months between testing) that low IgM has been noted. The first time, his Infectious Disease dr dismissed it as either a lab error, or inconsequential. But now that we're seeing it again, I of course hit up google. We're seeing a different specialist, a Hemotologist/Oncologist/Immunologist at a different hospital.
The only thing I'm finding is info on Selective IgM Deficiency http://emedicine.medscape.com/article/137693-overview and at the very bottom of this article is does state that this has been seen in kids with Connor's syndrome (22q11.2 deletion). This article also says that it's counterintuitive why someone would have normal IgG and IgA but have low IgM, which is exactly what Connor's labs have shown.
We're still waiting on antigen testing to come back, so I haven't spoken to the dr yet about any of this, only the case manager. I expect antigens/mitogens to be normal, they always have been.
Has anyone experienced this? Any good info or links for me? I always like to be well-read on a topic before talking to the dr.
Background: Connor has 22q11.2 Deletion, called Velocardiofacial Syndrome or DiGeorge Syndrome. He is 3.5, still breastfed, never in daycare (although now in preschool and in lots of center-based therapies). He has had lots and lots of illnesses, including 3 pneumonias, more than a dozen haemophilus influenzae (non typeable) infections (including one that was systemic requiring 4 weeks of IV therapy), severe rota virus, two RSV infections, and dozens of other illnesses with no names.
Connor had another round of immune function testing last week and some of the results are in. He still has the expected t-cell deficit that we've always seen (and is very common in his syndrome) it is still rated as mild. But he also has low IgM. This is the second time in a row (9 months between testing) that low IgM has been noted. The first time, his Infectious Disease dr dismissed it as either a lab error, or inconsequential. But now that we're seeing it again, I of course hit up google. We're seeing a different specialist, a Hemotologist/Oncologist/Immunologist at a different hospital.
The only thing I'm finding is info on Selective IgM Deficiency http://emedicine.medscape.com/article/137693-overview and at the very bottom of this article is does state that this has been seen in kids with Connor's syndrome (22q11.2 deletion). This article also says that it's counterintuitive why someone would have normal IgG and IgA but have low IgM, which is exactly what Connor's labs have shown.
We're still waiting on antigen testing to come back, so I haven't spoken to the dr yet about any of this, only the case manager. I expect antigens/mitogens to be normal, they always have been.
Has anyone experienced this? Any good info or links for me? I always like to be well-read on a topic before talking to the dr.
