Chinese proverb

"An invisible red thread connects those who are destined to meet, regardless of time, place or circumstances. The thread may stretch or tangle but will never break."
(ancient Chinese proverb)


Wednesday, November 26, 2014

another piece of the puzzle

Audra has been seeing an Immunologist ever since her first hospitalization, which was just two weeks after we brought her home...when she had horrible fevers of 105 degrees for 28 days straight.  She was eventually found to have an abscess in her kidney...after having been through just about every single test possible.

And the exact same thing happened six months later, but thankfully this time we found the problem right away.  Both times the doctors were concerned about the extreme response her little body had to a seemingly common illness (pyelonephritis=kidney infection).

These two illnesses combined with Audra's history of infections in China (including a fungal pneumonia and ear infections that resulted in a ruptured ear drum and hearing loss) and her failure-to-thrive, malnutrition, chronic diarrhea has had the immunologist concerned about Audra's immune system for quite some time. Audra has had extensive blood work done...but there was never a clear answer.

Last month Audra has more follow up labs done.
This week she had a follow up appointment with the immunologist.
And this time the answer was clear.

When we brought Audra home from China she had near non-existent levels of certain vaccine titers.  The thought was either she wasn't actually given the vaccines in China or the vaccines she was given weren't administered correctly.  We were hoping one of these two scenarios was the case...because, if not, then it meant something within her immune system wasn't working properly.

So we re-vaccinated Audra and then checked her vaccine titers again about a month after that...and they increased to normal levels.  I thought we were off the hook.  And I think the immunologist thought so too.  The last step was to re-check those same vaccine titers about 9 months later to make sure Audra's immune system could hold on to those antibodies.

Last month her vaccine titers were checked again and they were near non-existent again.  She has lost all of her immunity over the past 9 months. Essentially, her immune system cannot retain or remember the immunity it is given via vaccinations.

This combined with her intermittently low antibody levels (IgG and IgA) clearly indicated to the Immunologist that Audra has a Primary Immunodeficiency...either Specific Antibody Deficiency (SAD) or Common Variable Immunodeficiency (CVID).  Audra had more blood work done today to help determine which of the two she has.  Either way, the treatment is the same...replacement immunoglobulin therapy.

Audra will have her first infusion of replacement IgG next week at the hospital clinic.  After that she will get weekly infusions of IgG at home.  A home care nurse will come to do the weekly infusions for a while, and eventually we will transition to doing them ourselves.

Am I surprised?
...no, I have learned to expect complexity from Audra.

Am I worried?
...sure, she has so much going on.  Too much.  How much can one sweet little girl handle??

Am I hopeful?
...ABSOLUTELY!!!  I hope and pray (every.single.day) that we will eventually find THE answer to the little medical mystery that Audra is.  This has to be a piece of the puzzle.

1 comment:

  1. Wow Shannon- every new thing you discover has me going to the internet to learn more about it. I am becoming quite educated through your sweet Audra! I pray for her everyday- as she is such a miracle, and so very special to me. Sending hugs to you all - Kathy K

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