| 8:14 AM |
Fall Update |
It's hard to believe it's been just 4 months since we last left the hospital. It feels like such a long time. Sam has been doing remarkably well lately - not without some complications, but nothing like what we expected. We are down to just taking Bactrim twice daily and Pulmicort once daily. We still keep him fairly isolated (especially with school in session), but he's really starting to get around and even starting to walk!
The diagnosis of Hyper-IgE was also confirmed since our last post - Sam's blood was sent to Bethesda (NIH) for Dr. Holland to run tests for the genetic defect that causes Hyper-IgE. Indeed, he has the defect - this really only corroborates the diagnosis, as he is so symptomatic even a negative test would only have shown there is some other possible cause they have not yet discovered. They will eventually want to run more tests on Sam as the years roll on.
Probably the biggest single issue of late is the eosiniphilic dermatitis breakout on his head. It's very itchy and the only non-corticosteroid treatment for it is a cream that we have to use very sparingly. He itches so vigorously at times (especially in his sleep), that he bleeds and creates open sores. He's also been growing some ulcers in his mouth that have made it hard for him to eat comfortably.
On the whole, he's been quite healthy. We are cautiously optimistic for the fall and early winter...
The diagnosis of Hyper-IgE was also confirmed since our last post - Sam's blood was sent to Bethesda (NIH) for Dr. Holland to run tests for the genetic defect that causes Hyper-IgE. Indeed, he has the defect - this really only corroborates the diagnosis, as he is so symptomatic even a negative test would only have shown there is some other possible cause they have not yet discovered. They will eventually want to run more tests on Sam as the years roll on.
Probably the biggest single issue of late is the eosiniphilic dermatitis breakout on his head. It's very itchy and the only non-corticosteroid treatment for it is a cream that we have to use very sparingly. He itches so vigorously at times (especially in his sleep), that he bleeds and creates open sores. He's also been growing some ulcers in his mouth that have made it hard for him to eat comfortably.
On the whole, he's been quite healthy. We are cautiously optimistic for the fall and early winter...