February 2012 - "The Sunday we worried about the right leg weakness"

So two days after Charles first-ever "tonic" seizure his right leg was still weak, he was either limping, dragging/swinging it around a bit, OR he was just falling altogether when walking. Since it was lasting 2 days, I called the neurologist and they recommended we come into the Children's Hospital Emergency Department yet again - making that 6 or 7 times in the ER in a year and a half. This time though we got in more quickly (because I called ahead) AND we got to see the Neurologist FIRST instead of last. They were worried that maybe he had a stroke, but that more likely it was post-seizure limb weakness. So to rule out some other causes, they drew blood (2nd time that weekend, with an IV staying in), and performed a CT scan, where he had to remain still. They found a lot of fluid in the CT scan due to his current ear infection. They also found some "calcification" in the right section of the brain, for which we have no idea of when and how it appeared. It doesn't affect anything though. During this neuro consult, we got to see Dr. Schultz again, along with her boss that day. They decided at this point, that MAYBE they would need to change Charles' diagnosis from "benign infantile myoclonus" to potentially "cortical dysplasia". The reason for this is because of the weakness in the leg, which could mean that an MRI might show the cortical dysplasia in the portion of his brain that controls right leg movement (left section, deep). In my next post, you'll find out the results of that MRI.

PHOTOS: one shows Charles helping to get his IV brace off, one shows off Charles' "prince charles" blanket Anna made him the first time he ever went to the hospital for seizures, and one photo shows Charles' being mummy wrapped to get his CT scan

February 2012, "The Friday of his first-ever 'tonic' seizure"

Charles went another 3 months (December to February) until another "spell" occurred. It was a Friday morning at 8am and we were getting the kids ready for school when he had been having some minor seizures. He and David took a bath and I got him out and put him on my bed to dress him when all of a sudden he got a NEW seizure that I had never seen before. Later, the doctors referred to it as a "tonic" seizure. It lasted about 15 seconds (vs. 4-5) and he arched his body, it was stiff as a board, and his neck was twisted to the right. It was SOOOO scary.

We quickly took the kids to Grandma Dianne's house (so they could go to school) and took Charles to Children's Hospital Emergency Department for, I think, the 5th time. We waited in the lobby for a good hour. We were disturbed about this particular visit because the neurology department did not send down for a consult to the ED, instead they just advised us to increase the meds, yet again, to 3ml twice daily. However, they also perscribed the ED docs to give an IV of 18ml of Keppra. Let me back up and say that, yet again, Charles is having ear infections at this point...a "trigger", we believe. He has has 7 ear infections in a one year period, and is now scheduled to have tubes put in March 9th at Kaiser Franklin Medical Center, here in Denver.

Charles is sporting his "tye-died" shirt that David made for him. After about 4-5 hours, we went home. He slept at the hospital for about 30 minutes - one doctor came in during this time, but I didn't let him wake Charles up to check him out - he DESPERATELY needed some sleep. We went home and he slept for 3 hours after that. The next morning (Saturday) he had a few minor seizures, but he also had weakness in his right leg causing him to fall frequently, making him VERY frustrated. I'll talk more about that in the next post. Charles took his "hospital" blanket with us - Anna (his cousin) made it for him - more pics of that later.