Thread: Please HELP me!
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Old 02-01-2013, 12:10 AM
Tracy9 Tracy9 is offline
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Join Date: Dec 2010
Posts: 166
10 yr Member
Tracy9 Tracy9 is offline
Member
 
Join Date: Dec 2010
Posts: 166
10 yr Member
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What was your IGA level? I'm asking because often we can have labs that are a little off yet it is insignificant. These levels can be off a little without signifying anything.

The reactions you had to IVIG sound pretty normal. I've had anaphylaxis to IVIG many many times, and it was hard to breathe, my chest tightened up, I was panting, massive redness all over face and neck, heart palpitations, blood pressure shot up, hoarse voice, hot, burning face and neck, etc. I have to get mine at a Cancer Center because of my anaphylactic reactions. I am not IGA deficient, it is fairly common to get reactions like you described. Being IGA deficient and getting the wrong brand of IVIG can kill you, not cause a minor reaction.

Also I know a lot about Primary Immune Deficiency Disease. My 17 year old son has had it his whole life. He was just cleared of it when his IGG just spiked up to 1040 after being in the low 600's the last several years.

He was super sick his whole life, missed a ton of school, constantly had infections, and had 22 ear infections by age 2 to give you an example. To be diagnosed with PIDD or CVID your IGG has to be really low, like 300 or 400. You have to have infections that do not clear up, and can become life threatening or require hospitalization. It's basically like being a mini version of a Bubble Boy. Cody could never fight anything off, he caught everything going around, his sinuses were completely impacted on MRI, he could not breathe through his nose for years. Even with all that, he was only borderline, and he was practically homebound. (he had a lot more symptoms.) The diagnosis of PIDD is only given to people who are basically severely ill and have a very low IGG/IGA, not borderline or even somewhat low, and are constantly sick and in the hospital unable to fight off infections.

We've been dealing with immunologists for years with Cody. Trust me, having asthma/eczema/gluten allergy is NOT PIDD. If you have it, you know it because you can't function and you are constantly sick with infections that won't clear up.
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