November 26, 3013: We are back in Rochester for the follow-up EEG after one month. Last month they saw activity consistent with a focal seizure disorder, and the past few weeks have been like a roller coaster. Chase was doing really great and we noticed improvements in his development- even throwing temper tantrums just like his sister did at this age! Then last week, he caught a virus at daycare and was really "off". This is an example of how this diagnosis has put fear in us forever. He would wake up from naps dizzy and fall over. He was miserable especially when he woke up and would not smile at us or focus on anything. (This reminded us of when his brain activity was abnormal.) We spent too many hours crying last week and did not sleep, anxious to get back here for his test, just sure that they were going to see something on this EEG.
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| Funny picture of the boys- Luckily the crying did not last long! |
It turns out, Chase was just acting like a miserable child with a virus and we will forever be paranoid :). We found out today that Chase had his first all-clear EEG and we do not have to return for 3 months for another test!! He will stay on the topiramate for at least one year with clear EEG's before they do any experimentation of taking him off medication. He has a very high chance of developing other seizures later in life, so we will always be on guard but he has had one of the best turnouts that we could ever wish for. The doctors discussed how Chase has a lot of work to do to catch up, but we feel good that we are already doing everything we can possibly do at this point to help him.
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2 of the 3 Pediatric Neurologists we have been working with at Mayo,
Drs. Wong and Perumpillichira |
My new mission is to share our success story to help other families facing this devastating diagnosis. There are many terrible outcome stories online as we personally discovered, which added to our stress. Of course every situation is different, but I would like to share our positive story. I have successfully contacted the marketing lead for Infantile Spasms at Questcor, the manufacturer of the Acthar gel (ACTH) which stopped Chase's spasms. During this Thanksgiving week, she is planning to share out story with the team at Questcor to remind them of why they work hard and do what they do every day. I have also contacted other Infantile Spasms support groups and neurology organizations.
This Thanksgiving, we are most thankful for Chase's success. He is an amazingly strong and resilient little man and we tell him every day he will do great things in his future.
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