Ok, so weve see pain management, neuro, genetics, and metabolic drs today. They have all gotten a complete history and reviewed the medical records. Theyve all seen videos of Alyssa happy and in her issues! They are all amazed at how she does and reacts to the clonidine. They are amazed that shes not comatose due to the amount of clonidine she receives. They are ok with keeping her on that amount because they can see that her body tolerates it. They are calling in a research dr to research Alyssa only. Of coarse research takes months so we wont wait on that but they feel it could be beneficial. They are calling the mitochondrial team to evaluate her on that also. They are wanting to do an MRI in a few days and spinal tap Monday. Alyssa will have to be put to sleep with both procedures so they want her lungs completely clear before doing that. They mentioned starting some different meds to see if they help but want to get with the entire team of drs and consult with each other before starting that. We have found that when they check her reflexes the left side reacts to the right side being hit and the right side reacts to the left. That tell them that there is a cross or miscommunication in her nerves somewhere because thats not normal. They want to look into her metabolism and not just for digesting food. They will look at all the different chemicals in her brain and her metabolic panel. They are trying to get her comfortable and find the right medication so that we can go home and wait for the results of all the bigger test that take a while to get back! We dont know when that will be! We are hoping to be going home by Tuesday or Wednesday!! Well know more tomorrow or Saturday! Please continue praying for Alyssa and her brother and sister because they are going through so much as well.
Posted on: Fri, 09 Jan 2015 04:12:34 +0000
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