Miss Haven's IgG levels were great this week so she will not need to have IVIG this Friday and it has been postponed to next Friday. She is very happy about this because IVIG takes about 6 hours to administer!
As for her MRI - she will not have the head done on this round. It was too late to add it to the order. If they would've added it to the order it would've caused the hospital to have to cancel another child's MRI and require more anesthesia than was originally prescribed. Since ROHHAD children already have issues with anesthesia we will wait until the next scan to add the head. it is definitely good to have the head scanned for tumors once a year as it has been noted that some ROHHAD children have developed tumors in the brain as they have aged.
MRI remains set for next Thursday - hopefully it is early in the morning because she can't eat before she goes. Without the head scan she should be out within 4 hours.
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Hi everyone. It's been a long time since I sat and wrote about our daughter's extremely rare disease diagnosis. Literally 15 years a...
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I received this story in my email today. It still shocks me that my daughter has ROHHAD. It's a horrible disease that destroys a child...
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