A couple weeks ago on a Tuesday morning Jason and Jackson went out to run an errand while I hopped in the shower. Typically when I shower Charlie Claire sits in the bathroom and talks to me. On this Tuesday morning my shower was very quiet. When I stepped out I saw Charlie asleep in my bed at 10:45am.
At first we did not think anything of it and just went about our day. By the end of the week I emailed the neurologist because it seemed that C was just a little "off." We decided to give it a few days to see if she was possibly coming down with something. She seemed fine over the weekend but then on Tuesday morning I came home from a meeting and she threw up. After throwing up she laid down and fell asleep.
I called the pediatrician and brought Charlie Claire in that afternoon just to get the once over. Essentially everything looked good, C was running around like nothing had ever happened and as we were about to leave she had started to dry heave and then asked me if she could lay down. I carried her to the car where she proceeded to fall asleep. Over the next few days I noticed that C would have "episodes" (in the morning, only one time in the afternoon) where she essentially zones out for about 15-20 seconds and then she would dry heave or vomit and then ask me to pick her up and then tell me she wanted to snuggle with her pillow. Once she was snuggled up on her pillow she would sleep for about 30 minutes.
After waking she would proceed with her day as if nothing ever happened.
Thankfully after being in touch countless times with Dr. M's office they were able to quickly get Charlie Claire into the EMU for a 23 hour EEG.
These episodes have not been happening every day so I was extremely nervous that C would not have one and then we would have been SOL. She did not have an episode on Friday morning so I had a good feeling that she would have one this morning. Typically they have been occurring between 7:30-8:00 in the morning. Right about 8:00 this morning when Charlie Claire had not had one I really started to feel defeated but a few minutes later I was super thankful at 8:10 when she had an episode. She did not get sick but she did ask me to pick her up, she asked to snuggle with her pillow and she promptly fell asleep.
Dr. M was on service this week so we were blessed to have him being in the hospital reading her EEG. He came to see us a couple hours later after reviewing the study. Essentially these episodes are seizures but they are still minimal. It is normal to sleep after a seizure, it's just not something C has ever done. He is not concerned with this new development. He said it is not uncommon for seizures to present themselves differently as the brain grows and matures. The seizure itself is not causing any damage to C's brain and it essentially shows the same pattern as her "normal" simple partial seizures. We have been able to keep her off medication for so long since her normal seizures do not interfere with her day, however, since these episodes are we need to intervene.
Dr. M has always been conservative with C's medications and he still continues to be. He has always been big on weighing the risks/benefits and we are grateful that the plan he came to us with today was well thought out and logical. We will be starting Charlie Claire on Trileptal and we will see how she responds.
We were discharged this afternoon and we are settled back at home now!
We continue to be beyond thankful for Dr. M and his approach with Charlie Claire's care. We have been blessed with a great EMU staff at VCU who are so, so good to our girl when she is there! We are grateful for all of your love and support! Lastly, we are thankful for Charlie Claire and she continues to amaze us with how well she perseveres through whatever is thrown her way!
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