Wednesday, September 30

Pneumonia titer results

A few months ago we began diagnostic studies to try and figure out why Tommy has recurrent bacterial respiratory tract infections. After he spent a week inpatient in June with double pneumonia (and many more hospitalizations earier) it was apparent something wasn't working in Tommy's immunity.

In August he received the pneumonia vaccine because his anti-polysaccaride antibodies were at zero. And in September we had his titer count rechecked to better understand how his body handled the vaccine. If his antibodies were up and in a normal range, then he would be immune to pneumonia or at least better able to fight off the infection. If the antibodies were still down then we, and our local Immunology team, would be concerned of other abnormalities.

Today we learned, after much prompting over the last few days for Seattle to talk to Bellingham (frustrating), that his titer count is still at zero, or near there. I feel like my son has already been through everything possible and that this is just absolutely unfair. The test result was that his body didn't develop any antibodies. It's the worse result for that test.

So, in the next week we will meet with a team of Immunologist here and talk about why his T cells and B cells aren't working correctly. We had already ruled out Cystic Fybrosis and did a general high level Leukemia rule out. But according to the conversation today, we will be talking about additional diagnostic testing for what the specific abnormality might be.

Short term solutions might include prophylactic antibodies for the entire winter season. Non stop. Which if you have a child with Hirschsprung's disease you know this is a debilitating answer. Another solution might be immunoglobin therapies. Long term solution is prayer. Literally, I fell to my knees when I got off the phone with the news and prayed that God would give Colin and I guidance on what to do. And then immediately went to hug him while he was napping. He has been thru too much already and this is just unfair.

I would really like to hear from those of you that know about SPADS, polysaccaride antibody defeciency syndrome. Did you choose to do ImUg therapies or prophylactic antibodies? And I would love to feel some good thoughts heading to Tommy!!! He wants to hear everyone say he can do this one too!

Tommy Adventures