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Mastoiditis

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I haven't posted in a while. Things have been much better for us since we

started subq hizentra. We did have one hospitalization for an asthma attack last

month, but that has been the only biggie since Jan of this year.

1 week ago my 4yo got an ear infection. No big deal it happens to us a lot. We

went and were giving zithromax on day one of pain. Within 2 days he was a

screaming writhing fevered mass of hot mess. We went to children's er where he

was looked at, labs drawn and ct scanned. Justus has mastoiditis. FYI: I should

not have googled that one... We were admitted for iv antibiotics and his ear goo

sent for culture. He grew pseudomonas.

Our immunologist came, his igg needed to be higher so we got mega dose of ivig

while in hospital. Lots of antibiotic. They seemed super concerned about the

pseudomonas. Said it's opportunistic. I feel very afraid now. I am worried it

won't go away or he'll get something worse. In middle of our hospital stay he

had another bad asthma attack...

Now his doctors are calling him fragile and we have appts every 2 days for the

next 2 weeks with ENT, primary and immuno.

Aside from whining I am looking for info on what we are dealing with. Anyone

else delt with this kind of stuff? Is this an indication that I need to go to a

bigger center for evaluation or just a fluke? It really seemed like everything

was under control. I feel like I came close to losing him last week...

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