This is an email I wrote to one of David’s doctors. I’m really starting to think more and more that his strange NEMO result might be the answer…
We just need the best minds I can find in medicine to help us. The smartest of the smart 🙂
Begin forwarded message:
From: Teddy Leigh
Date: July 11, 2012 10:02:00 PM EDT
To: “Dr. Cr
Cc: Dr. K
Subject: News from Dr. Puck’s office 🙂
So I spoke with Mica today, from Dr. Puck’s office.
As we had thought might happen, she relayed that Dr. Puck doesn’t entirely know what to make of David’s NEMO results.
(So if we had any doubts before, now that we’ve stumped Dr. Puck, we’re officially an usual medical case 🙂
Dr. Puck is personally contacting a researcher at the NIH, who is one of the lead researchers in the world on NEMO to discuss what they think of David’s test results, to try and figure out what we should do next.
Mica also reiterated they don’t really know what will be the next step…at this point, I get the impression Dr. Puck’s office is hoping that we will be looked at by them. It will probably involve shipping blood, but I also stressed we would go anywhere if needed.
It’s kind of a side note, but it was kind of poetic that I got the call today while walking around the cemetery trying to find my grandfather’s grave here in Ottawa…(even though now I think our problems may have come from my paternal grandmother, whose mother died of leukemia in her early 50s).
We’re in Canada visiting my father for a few days, and I had just met with his doctor earlier in the day before I got Mica’s call. I was a little disheartened that my fathers doctor really didn’t have any idea of where to look or what to do, so the call from Mica was like a little bright light. It really made my day 🙂
(My fear was that Dr. Puck’s office would blow us off completely (or say the results meant nothing), so I was happy to hear they’re investigating further. David clearly needs to find the answer…
I reminded Mica that David rarely sweats (consistent with NEMO), and his bacterial infections….
I actually just took David to a doctor here in Ottawa (after my appointment) for another pink eye infection this afternoon. It really just never ends 😦
(This doctor at the urgent care is a French doctor who was very nice, and curious about us…unexpectedly, he expressed a willingness to help get us worked up by genetic researchers here in Ottawa if we hit a dead end in the states, but neither of us were sure about the logistics of something like that. He was supportive though…very curious about the child with the red eye and no puss and a mother rattling on about infections. He was an unexpected find, but hopefully we won’t need his help–)
Hopefully, we’re now on the right path with NEMO 🙂