| 11:16 PM |
Waiting Game |
The implications of the pneumocystis diagnosis have been weighing on us today, with all the worst-case scenarios playing out in our heads.
In 99% of the pneumocystis cases there is an underlying severe combined immune deficiency (SCID) that requires treatment. That could range from HIV (which has been ruled out) to hyper eosiniphilia or cytomegalovirus.
In 1% of cases though, the best-case scenario is that an aggressive steroid treatment combined with a sever milk protein allergy and malnutrition creates a temporary weakness of the immune system and causes the T-cells to stop functioning properly. Fortunately, this matches Sam's history and may be the only root cause of the pneumocystis. Meaning, he is very allergic to milk protein, and needs a hypoallergenic diet until he grows up a bit at least.
There is still a chance that this is not the cause and he is severely immunocompromised. For now, they are treating this as a SCID and he is in strict protective isolation to protect him from any other illnesses that could set us back again. The test results to rule out the other SCIDs are in the works now at Mayo, and will take at least until next Friday, possibly Monday. So, we are here for at least another week.
We're trying to focus our positive thoughts and prayers on that best-case scenario, though. His treatment is going well; he's still being tube-fed and is regularly taking a couple ounces of hypo-allergenic formula to top off.
Good night, and thank you for your support and prayers!
Sent via BlackBerry by AT&T
In 99% of the pneumocystis cases there is an underlying severe combined immune deficiency (SCID) that requires treatment. That could range from HIV (which has been ruled out) to hyper eosiniphilia or cytomegalovirus.
In 1% of cases though, the best-case scenario is that an aggressive steroid treatment combined with a sever milk protein allergy and malnutrition creates a temporary weakness of the immune system and causes the T-cells to stop functioning properly. Fortunately, this matches Sam's history and may be the only root cause of the pneumocystis. Meaning, he is very allergic to milk protein, and needs a hypoallergenic diet until he grows up a bit at least.
There is still a chance that this is not the cause and he is severely immunocompromised. For now, they are treating this as a SCID and he is in strict protective isolation to protect him from any other illnesses that could set us back again. The test results to rule out the other SCIDs are in the works now at Mayo, and will take at least until next Friday, possibly Monday. So, we are here for at least another week.
We're trying to focus our positive thoughts and prayers on that best-case scenario, though. His treatment is going well; he's still being tube-fed and is regularly taking a couple ounces of hypo-allergenic formula to top off.
Good night, and thank you for your support and prayers!
Sent via BlackBerry by AT&T
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