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Hayley

low IgG and IgA - Dr. says we need to do IVIG

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After thinking we are seeing good progress on a high dose of augmentin, I got a call from Dr. L today saying that prelminary bloodwork came in on my dd and her IgG and IgA are very low and "she needs IVIG." We are meeting with her on Friday to review the labs and discuss IVIG, next steps, etc. When she called I was in a therapists office waiting room with dd (for a cognitive behavioral therapy consultation) and couldn't talk long or really absorb so needless to say I have about a million questions. One thing that struck me...I mentioned that we have United Healthcare and asked if we need to do this before 11/1 given I've seen postings here about them not covering IVIG after that date. She said that it wouldn't be a PANDAS diagnosis for the IVIG now, but something else that I didn't quite retain in the rush of it all (Maybe Hypogammaglobulinemia -- I gather this just from googling autoimmunity and low IG levels and I think it may have been the term she used) and that it shouldn't be a problem. The dosage of the IVIG is lower in this case than if it were being administered as a straight PANDAS treatment. She is now calling dd's conditions PANS/PITAND not PANDAS. Interestingly, the current bloodwork does show raised strep titers (Anti-DNase B Strep Antibodies @ 93 versus 0-77 range).

 

She also noted that the coxsackie titers are high (we thought that it was coxsackie that prompted the current symptoms) but "old." I'm not sure how she can tell that but I assume she knows and this would mean that it wasn't coxsackie she had back in July, but maybe sores related to the autoimmunity issue.

 

So confused. Does this make sense to anyone? Has anyone been down this path? I know I'll have answers from her on Friday, but right now my head is spinning and that seems eons away. We had thought that IVIG was a down the road thing at most and are now overwhelmed thinking we will be doing this sooner than later.

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Yes, probably hypogammaglob....

On the cocksackie (who named that one?), when she says its old, probably means that IgM was normal or low but IgG was elevated. That doesn't necessarily mean that its an old infection. IgM should be elevated at the beginning of an infection, until IgG levels are adequate, then they recede. But, elevated IgG could either mean an old infection, or a current infection that had a low IgM response, or a chronic infection that flares and recedes but never quite goes away.

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Thanks for the explanation, Peggy.

 

PowPow, Dr. T had initially recommended some labwork (we had a phone consult while we were waiting for Dr. L) but then our Dr. L appt was moved up so we waited until we could see her to draw the blood. I think those were on Dr. T's original script, but she was in agreement with his recommended tests and added to them.

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Re: Dr. L and immunodeficiency labs--not our experience. I had PCP run these through their lab. Dr. L founds it amazing that DD's labs came back normal on everything though lowish in one IgG subclass given DD's continuing cycle of sinus, strep, and myco p with a six day hospital stay for necortizing pneumonia thrown into the mix. (DD was also quite out of range high on IgE.) In any case, Dr. L is having them all re-run through Quest.

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IVIG is a very easy treatment and I would suggest trying not to be overwhelmed by it. The immune deficiency diagnosis (got that one too) will actually be helpful to you with the insurance company. We've seen so much improvement with IVIGs. My daughter looks forward to having them. It really is a pretty painless and easy treatment. I don't know how old your child is, but IVIG isn't something to be scared about. It is one of the biggest blessings we've found. : )

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P. Mom, That's so strange. How old is your child?

 

Is this low IgG, low IgA thing related to what Dr. T had called being a low strep responder? I keep reading about kids who have this getting sick all the time, but my daughter really rarely presents with illness. She literally did not miss a single day of school last year. Is she sick, but not showing signs because her antibodies are low or have we just been lucky (e.g., she's vulnerable, but somehow escaping catching stuff)?

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