Update in Alyssas apt yesterday with the geneticist. Alyssas last test came back undiagnostic. There is not much more they can test for that insurance will approve. And even if we fight it the test would not help her or give her a treatment. He is starting her on a medicine for reflux that is really strong and hoping it will help with some of her discomfort. He doesnt want to change any other mess right now without talking with her neurologist first. He said whatever she has is very rare and will not have a treatment plan for it! He believes she does have mitochondrial disease but cant 100% prove it without a brain biopsy and since that is to invasive for her and mito doesnt have a treatment there is no point in putting her through that. I agree. Over the next few months we will slowly start experimenting new meds on her to see if it will help her issues but we have to have her neurologist on board first. Alyssa does have a few hours good a week but not for long. Her de saw her at her worst yesterday and felt so bad for her and wants to help her but he cant. He is stumped by her and so are all of her other drs. We know that God has a perfect plan for Alyssas life and I will continue believing in Her healing. I do ask why sometimes and I would be lying if is said I didnt, but I also know that God is in complete control and I will get my answer when He is ready. We ask that you continue to pray for Alyssas healing and for her drs to come with with a plan to help give her relief! Thank you all so much
Posted on: Sat, 27 Sep 2014 23:12:52 +0000
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