July 30th: Chase was finally seen by Sanford’s new Pediatric Neurologist, who diagnosed Chase with myoclonic epilepsy, because the seizures moved only one part of his body- his head. I was glad to have such a firm diagnosis and we were told his brain activity was going back to normal in between seizures, so we could feel good at least about that. The eye watering still did not make sense to him and he thought this was a separate issue, but would do more research. We just knew it was ONLY when Chase had these seizures and had to be related. The dose of Keppra was doubled and we were sent home with a scheduled follow-up appointment 3 months later in October. The increased medication had no effect in the coming weeks.
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| Chase at the lake August 2013 |
By this time, Chase had seen 2 different chiropractors, had started Vitamin B which is supposed to help seizures, and special vitamin food supplements. We bought the most expensive formulas because we were afraid he was reacting to something in the formula or food he was ingesting. He had energy work done by a therapist who does intuitive healing. We rubbed DoTerra frankincense oil on the bottoms of his feet and neck before he slept every night. We were trying everything we had heard of could possibly work to stop the seizures. We even considered not using cell phones or WiFi in our home in case that was doing something to his brain.
For some time now, even though Chase could take a few steps he was always staying within just a few feet of us. He was constantly falling down and getting injured. As the weeks went on, he started to move around more. This was really frustrating to me because people who saw him for short periods of time thought he was fine because he could walk, and just didn't understand why we were so concerned. However he really just darted around aimlessly and continued not to progress in all of the other skills. He would be transfixed by patterns and just stare at certain colors, patterns or lights, to the point where I would bring him to the grocery and people would comment on it. He was not interested in much- he did not pick up toys at home, he didn't even notice our cat (which shocked us after our daughter chasing and infatuated with animals at this age!) We did not have to put anything away because he didn't get into anything like a normal boy of this age. He was taking about 4 naps a day at daycare and a few at night, so basically he was sleeping A LOT. I also think being around it every day, we got used to it and didn't realize how bad it was getting.
We kept all of our fun summer plans and took Chase along, but we were doing this to distract ourselves from the reality of what was going on. We were just hoping this would stop on its own (as EVERYONE we knew kept telling us would happen because they knew a child with seizures and they grew out of them), but that didn't look like that was going to happen anytime soon. Frustrated, I decided to send Chase’s medical records and symptoms in to the Mayo Clinic in Rochester, Minnesota. When I called they said they would contact us to let us know IF they could help us. However, within 2 days I received a call that Chase was scheduled for 5-7 days of tests and appointments the following week. We were shocked at their extensiveness and urgency of our visit, but knew we had to drop everything and go. 
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