| 10:42 AM |
Day 12 - Sunday |
Dr. Shapiro is very confident in the HIES syndrome diagnosis, with or without a STAT3 gene defect. He said this is a classic presentation and symptomatically a perfect match. He expects Sam's IgE to spike at around 20,000 by 18 months to 2 years.
He wants us to try as hard as possible to do normal things with Sam. Anything outdoors is fine, and just wants us to avoid crowded and potentially germ-infested, poorly-ventilated indoor areas. He does not think that strict in-room isolation is necessary, but we should control carefully who comes into the house.
Shapiro feels confident that Sam will have much longer periods infection-free once he's on prophylactic antibiotics, but cautioned us that every case is different. Sam could present with all the symptoms of HIES, or just a few. Time will tell.
We will just have to be much more aggressive when he is symptomatic. Now that we have everyone's attention, that shouldn't be hard to do.
For more information on HIES, you can read this:
http://www.primaryimmune.org/pubs/book_pats/e_ch12.pdf
He wants us to try as hard as possible to do normal things with Sam. Anything outdoors is fine, and just wants us to avoid crowded and potentially germ-infested, poorly-ventilated indoor areas. He does not think that strict in-room isolation is necessary, but we should control carefully who comes into the house.
Shapiro feels confident that Sam will have much longer periods infection-free once he's on prophylactic antibiotics, but cautioned us that every case is different. Sam could present with all the symptoms of HIES, or just a few. Time will tell.
We will just have to be much more aggressive when he is symptomatic. Now that we have everyone's attention, that shouldn't be hard to do.
For more information on HIES, you can read this:
http://www.primaryimmune.org/pubs/book_pats/e_ch12.pdf
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