And He said unto me, "My grace is sufficient for thee: for my strength is made perfect in weakness. Most gladly therefore will I rather glory in my infirmities, that the power of Christ may rest upon me."
2 Corinthians 12:9

Friday, February 10, 2012


Praise the Lord!  While we did not have the amount of seizures we were hoping for in the EMU, we did have a follow-up with the Neurologist that we spoke of yesterday.  Today's meeting was a lot better and gave us back our confidence in Mayo.  Truly, it was a night and day difference and we felt like we were able to get clear direction moving forward.  Additionally, the Neurologist was able to confirm everything that we have done so far and is truly wanting to get M better.

Our Neurology team at Mayo consists of multiple physicians that each specialize in a sub-specialty of neurology.  Epilpesy, Immunology, and Autonomic Dysfunction.  Our team, and the Neurologist that worked with us in the EMU all agree that we need to focus on the Immunologist's recommendations first.  Long-term, if none of the proposed treatments work, we will do invasive measures like brain surgery.  Yes, the surgery is intimidating, but even more so because a)surgery will not provide a complete cure, b) M's seizures are bilateral and while the right hemisphere is being controlled by medication, the left side is still seizing and this is M's dominant side of her brain; therefore, there is a much greater risk to her cognitive and physical capabilities if we did a surgical approach.

So what to do?  Again the EMU confirmed that the seizures coming from the right hemisphere of her brain are controlled.  So the seizures that she is still having are coming from the left.  The Immunologist's treatment plan is to do 2 weeks of Plasmapheresis.  We are not sure yet if this is something we elect to do at Mayo or close to home...still praying for that decision.  After plasmapheresis we will evaluate M's progress.  If we still need to do treatment we will then do heavy steroid treatments using Solu-Medrol.  Thereafter, we will look to more invasive options such as a Vagal Nerve Stimulator (VNS) and then brain surgery doing a resection. 

It was good to feel that there is a pro-active approach and we had multiple conversations and confirmation today that the docs here are intrigued and really want to come up with a solution.  The next step for the docs is to take M's case to "conference" and have a meeting of the minds to get insight and feedback to make sure that the current plan is in fact the direction we need to be heading. 

We are very excited and look forward to many phone conversations with our docs as we get back home and move forward with treatment.  More importantly we are extremely excited to be reunited with Critter (she thinks we live in Mimi's computer due to our Skype conversations)!

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