Now we're getting somewhere...

Finally...our immunologist from Seattle called this morning!  It's one of those things that is so complex and again I was told that there is so much water under the proverbial bridge, it's hard to pin down, "without a shadow of a doubt" what is going on but we have a good start. 

Shelbie has very low titers to her immunizations and her pneumonia titers are nearly non existent so that was scary news especially since we are headed into winter and flu season.  I talked about this virus that keeps morphing into one thing or another and our doctor wasn't surprised after seeing her labs and other results.  Even though her immune numbers are low but still within normal ranges, they are just not functioning normally.  That has been the hang up all along.  Most docs look at the numbers then scratch their heads as to why she is still sick all the time, they haven't considered the function of those numbers. 

So, the short story is that Shelbie has Primary/secondary Immune Dysfunction.  She will have it her entire life and it will get worse when she has chemo which we haven't seen the last of that either but that's another story for a different day.  The only treatment for PID is immune globulin infusions or IVIG every 3-4 weeks forever. 

    Here's how it all breaks down..
12The number of infusions Shelbie needs each year
12the number of days we will spend sitting around in the hospital
20,000the cost of one infusion
240,000the cost of treatment for one year
365the number of sleepless nights I have to look forward to as I wonder what the insurance company is going to think of this.

             Good morning sunshine...wake up and smell reality! (referring to myself of course...)

Spencer did not escape unscathed either!  He hardly has any immunity protection from his childhood immunizations and his pneumonia titers were extremely low as well. NO surprise there since he has already battled pneumonia more than once.  He is on schedule to receive a pneumonia shot then retest titers.  If he doesn't show more protection from the new immunization then they will begin talks on starting Spencer on IVIG too!  That means, take all those numbers I listed above and multiply that by 2.  It's inconceivable in so many ways, I can't even begin to express the way my mind is swimming, drowning, in the possibilities. 

Sam...well he is doing the best from an immune standpoint.  He is lacking titers of his chicken pox so let me know if anyone out there has the chicken pox visiting their house...I would rather just get this childhood disease over with!! sigh....



  1. I am going to lose sleep over this too! As if the illness weren't enough to totally stress anyone out....


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