We met with the neurologist at the Cleveland Clinic today. Emily had her well organized binder of all of Ellie's lab results and reports and even had copies to give the Doctor. I think he was impressed, I know that I was :)
As we had heard several times before Ellie's case is complicated and severe. The Doctor did a physical exam of Ellie and asked us a lot of questions about Ellie and her story. He then collected all of Ellie's reports, labs, and films and went back to his office to digest everything and consult other specialists. Upon returning he described what he thought may be going on with Ellie.
Going to Cleveland we had an idea of what may be going on after a very good meeting with our neurologist at Devos Childrens earlier this week. But we did not share this idea with the neurologist in Cleveland. We didn't want to influence his opinion. When he was describing what he thought might be going on with Ellie, both Emily and I were nodding our heads. He stopped and said, "You have heard this before haven't you?" We acknowledged his hunch and he responded by saying, "You were going to make me work for it weren't you?" Absolutely, no free ride here!
So, the theory today is, that Ellie may have a problem with her peripheral nervous system as opposed to her central nervous system or a muscular dystrophy. The most helpful pieces of the puzzle that helped them to consider this area were her physical exam, MRI and EMG. There are a handful of disorders that could be causing this, all extremely rare. They can be tested for with a blood test, and we hope to pursue that here in Grand Rapids.
The Good thing about Cleveland was that we were able to get a second opinion on Ellie's case. As a bonus, both opinions matched. It also affirmed our confidence in our neurologist here in Grand Rapids, who has taken an interest in Ellie and is deeply invested in her case.
Thank you for all of your prayers and support this week. Cleveland was not an "ah hah" experience, but it was worthwhile, and it confirmed a direction that we were heading. We can already see God's hand in why our original trip to Cleveland was delayed. It is comforting to know that we sit in the palm of His hands and under the protection of His wings.
We will keep you posted as this unfolds.
--Adam
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Dear Friends:
ReplyDeleteThanks for posting this so promptly. We are very thankful that this trip was a worthwhile one for you. We are glad you are back home safe and sound, and of course, continue to pray for you daily. We hope to see you soon!?!?!
Happy to hear that you are back home safely and that you had a good meeting with the doctor in Cleveland. We are also happy that Ellie has a good doctor in Grand Rapids.
ReplyDeleteLove and many prayers,
Julie & Philip
We are glad to hear you are feeling a sense of confidence in the answers you are receiving. Lydia also sees a neurologist at DeVos, and we have always been satisfied there. Your family remains in our prayers. We hope to see you around the 'hood soon.
ReplyDeleteInformation is so empowering!
ReplyDeleteEllie is such a wonderful teacher!
What a blessing to get so much confirmation on one trip.
LLLove you Alll
(Love your binder Emily!)
Ditto on everything above :)
ReplyDeletePerhaps Emily should start a home business helping people organize their medical "stuff." I know I could certainly use some help in that department, lol!!
We continue to pray for you all daily!
Its so wonderful that you got your second opinion, and that it goes with your original. Now you can stick to home and keep up with the progress! God is great!
ReplyDelete