Join Date: Jun 2007
Location: Dayton, Oh WPAFB
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Wife to Chris 12/27/07. DS1 Earth Day 2009 (4/22). DS2 March 6th, 2012.
It is impossible to have a primary immune disease, CVID, common variable immune disease, hypogammaglobulinemia without reduced IgG. That is the cornerstone of the diagnosis. When you say , "We know he has a Primary Immune Deficiency (t-cell deficit)" that is absolutely false.
As frustrating as it may be, may I suggest you stop trying to diagnose your child from the internet. If you don't have confidence in you kid's medical team, find another team. If the locals are not adequate, go to a major medical center, Mayo, Cleveland Clinic, Denver, St. Judes, UCLA, Stanford, Children's Hospital of Philadelphia or Harvard wherever. If you can find a study at NIH go there. In your neck of the woods, I;d probably try Cincinnati Children’s Hospital as a first stop
By the way, I have a primary immune disease as do both of my children.
The lack of vaccination titres may make it impossible to diagnose his specific issues. Until we vax'd DD, we had no specific proof of an immune issue despite chronic infections that appeared to be t-cell related. When we vaccinated against pneumococcus and found a very poor response, they were able to diagnose her with Specific Antibody Deficiency. DD has many hallmarks of CVID but she does not clinically present with CVID (no specific Ig deficiency). I'd still be questioning it had they not told us she was at serious risk, causing us to start and catch up her vaccinations. We wouldn't have a diagnosis without it, and as prone to infection as my child is, I'd hate to see the effects of any VPDs. Poor kid can barely deal with the common cold. RSV and coxsackie were godawful for her.
Ds was recently diagnosed with hypogammaglobulinemia which I've read is basically the same thing as CVID. He does have low IgG levels though. I think low IgG is a pretty major part of CVID so I'd be hesitant to say it's a possibility even though he has a lot of the other symptoms. I've been doing a lot of research lately on Immunedeficiency and if I come across anything that sounds like CVID without low IgG levels I'll let you know!
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