October 3, 2013: Two weeks later we had just begun tapering the ACTH and were back at Mayo Clinic in the Gonda Building 8th Floor we had become so very familiar with. It was the first EEG where Chase sat completely still and didn't even flinch as they scratched his head to attach the leads under the infant cap. It was almost eerie. We were so nervous during that EEG, we watched the computer monitor trying to decipher the brain activity but did not know what we were looking at but somehow it did not look good. We left the room sick to our stomachs and had to wait over 2 hours to meet with the Neurologists to go over the results. It felt like days. I knew the moment Dr. Joseph walked in with the biggest smile I had ever seen on his face that we were wrong.
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| Chase ready for his EEG- hoping for good news |
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| Chase and his new belly and cheeks at Mayo Clinic October 3rd |
The doctor reported great news – Chase’s brain activity was back at a normal level for a boy his age!! They were a little upset that he did not sleep during the EEG but his brain activity awake looked great. The plan now was to continue the taper off of the ACTH, but also start on the Topamax as an extra precaution. They were hitting it hard. They needed to monitor him very closely in the coming weeks because these seizures like to come back, so we were scheduled to come back in another 2 weeks for another EEG. We were told that he had a very high chance of developing other types of seizures later in life, so unfortunately we will always be on guard. That night, we celebrated with a great meal at our new favorite Rochester restaurant, Chester’s. Chase just sat with us and didn't make a sound but looked around.
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| Chase's EEG while he was awake was back to normal brain activity for a boy his age! |
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Tom (originally from Illinois) vowed he would become a
MN fan if a MN hospital saved our little boy.
Here is the new MN Fan! |
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| Thumbs up after hearing the great news! |
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