Letter to the urgent care doctor my son yesterday

I just sent this letter to Dr. Kyrillos, who David saw yesterday for his pink eye,

letting him know about the conversation I had with Dr. Puck’s office regarding the results of David’s NEMO test.

The timing of the call from Dr. Puck’s office was particularly poetic, because Dr. Kyrillos, while offering to help us explore avenues for help in Ottawa, he also reinforced the importance of following up with the immunologist who ordered the test, and he wanted to hear that doctor’s feedback as well.

Then voila, as if on cue, and hour after we left Dr. Kyrillos office Dr. Puck’s office called with feedback.

I love life’s little magical moments. It’s timing usually only seen in Hollywood films– 🙂

Begin forwarded message:

From: Tara
Date: July 12, 2012 8:23:06 AM EDT
To: Dr. Kyrillos via efax
Subject: Very poetic timing

Dr. Kyrillos,

Thank you very much for taking the time to help my son David yesterday with his pink eye–

I just wanted to let you know, about an hour after we left your clinic, I got a call from Dr. Jennifer Puck’s office (who is the physician who ordered David’s NEMO test), which was very poetic timing. I had been waiting to hear back from her office for a few weeks now (she’s very busy, so I wasn’t upset). I had gotten the results initially from David’s pediatrician, but we were still waiting for her feedback–

In a nutshell, they said they are stumped as well by the ‘inconclusive’ results of David’s NEMO test (the results I faxed you yesterday),

and so Dr. Puck called one of the top researchers of the NEMO mutation at the NIH (National Institute of Health, where they do a lot of research in the U.S.), to see what he thinks of David’s results because she doesn’t know what to make of them either.

(Dr. Puck is a very well respected immunologist in the U.S., so if she’s stumped, then we know for sure we’re a difficult case 🙂

It’s very exciting to finally have their feedback, though I have to admit I feel that ultimately I may have better luck at the University of Ottawa, since both my mother’s and my father’s families have been in Canada for many generations (my fathers family came to Canada in the 17th century (my birthname is MacKay–I was born at Army Grace Hospital on April 1, 1975), and my mother’s family has been here since 1851 (her maiden name is Berry (of Berry’d Egg Farm–other than breast cancer, they are totally healthy). Maybe the researchers at Ottawa have stumbled upon this family mutation already?

There has to be others in Southern Ontario with this rare mutation as well, since even though we are sick a lot, we can live long enough to create another generation–(though some, like my grandfather’s brother, died of pneumonia at 17 in 1940s).

So any patient with a history of infections, particularly bacterial and no fever and no elevated wcb, please think of me 🙂

I will definitely put together a packet of information, and I look toward to seeing you again in a few weeks–



About hopeforanswers

Some kind of rare immune deficiency, yet to be determined. A lifetime of infections without an elevated white cell blood or fever. Very grateful to be alive, very thankful for the friends who’ve supported me and for access to literally millions of dollars worth of medical care. I’m not the bubble child, I’m somewhere in between.
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