We had a big day today. We managed to squeeze 7 appointments with providers, a 90 minute speech test and a 5 hour infusion today! Whew!
Good News is that we might not need to do another infusion for awhile, bad news is that he developed a reaction from this round. After two rough days at home we ended up back in the ER trying to figure out what kind of reaction he was having. He was very tired, and was in screaming pain which he could clearly tell us was affecting his head. Turns out he contracted aseptic meningitis from this particular batch of IVIG. I guess this can happen in 17% of patients that receive this infusion. It sounds much scarier than it is and luckily after 5 days he was back to his normal self. I guess the reaction can build up after receiving infusions for awhile and our doctors are doing more research and contacting other doctors around the nation to decide what our next step should be. In reaching out to other parents in our support group it sounds like there are many other OMS kids who struggle with this reaction.
For those of you who like to know more details you can read more about this reaction here: http://www.annals.org/content/121/4/259.full.pdf
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