Adrenal insufficiency

The more we learn about MIRAGE syndrome, the more pieces of Charlotte's puzzle seem to be falling into place in regards to healing and recovery from transplant. The most important part of Charlotte's syndrome that we have been discovering is that her body can not produce "cortisol". Her adrenal glands have "insufficiency" and can not produce this hormone when it is needed. Cortisol is an important hormone that our adrenal glands produce to deal with stressful situations. For example, when we have surgery, have an upset stomach, get an illness, our bodies produce cortisol to deal with the stress and keep everything in our body in "homeostasis" so everything doesn't go out of control. Charlotte was started on a small dose of hydrocortisone in July. It was not enough and she continued to get sick. The doctors increased the dose of Charlotte's hydrocortisone, and her body has been doing much better. So, the endocrine doctors have decided that Charlotte will stay on the highest "physiological" dose of the medicine that she can get, which means the highest amount that a typical body would produce at her age. Apparently, Charlotte's body is very insufficient in its ability to produce cortisol. It causes big problems. We are shocked that Charlotte even made it through a bone marrow transplant without it. Unfortunately, this is what caused her to have so many trips to the ICU. The good thing is now we know, and one the correct dose of the medicine was started, her body responded really well.