Sorry for the delay in getting back with everyone on our last trip to Johns Hopkins for Emma's MRI. Honestly it's been a really rough summer and we are still waiting on test results. So unfortunately I don't have much to update.
Johns Hopkins is still in the process of comparing Emma's first MRI and MR Spectroscopy with the one she had done at JH a few weeks ago. They requested that our son also get a MRI because of some similar symptoms that have arose over the past 6 months (headaches etc). We had his done a couple weeks ago and Michigan is sending Johns Hopkins his imaging to compare to Emma's. They are both undergoing a genetic test at Baylor called global mapping. This will take about 4-6 weeks for results. Depending on results from our latest testing if there's no answers then Johns Hopkins is going to refer us to one of their research clinicians in Spain for genetic testing. Emma's Neurologist in Michigan has his team submitting her case to National and Global Medical Journals to see if they can get a hit. He is also going to start the application process to the National Institute of Health (NIH) Undiagnosed Diseases Program if we still don't have answers from this latest testing.
So all that to say, I don't have much to say right now. We are waiting and hoping and praying that answers will come soon. In the mean time we have 6 weekly appointments to try to manage symptoms. Thanks again for swimming with Emma on her journey.
Welcome to my daughter Emma's medical journey blog. Read updates on Emma and helpful tips for researching and coping with a child with an unspecified, rare genetic disease living in chronic pain. Click on the ABOUT tab to see how her journey started.